A step towards

filling the gap Quality of Care and Evidence-based practice in the Occupational Therapy practice of people with Parkinson’s disease in the University Medical Centre Ljubljana, Slovenia

Theoretical Background Report

Junior-advisors:

Maria M. de Boer Fieke M. Wermers

Senior-advisor:

Fenna A. van Nes

Date:

January 2005

Consultee:

Jelka Janša University Medical Centre Ljubljana, department Neurology

Institute:

Hogeschool van Amsterdam, department of Occupational Therapy

A step towards

filling the gap Quality of Care and Evidence-based practice in the Occupational Therapy practice of people with Parkinson’s disease in the University Medical Centre Ljubljana, Slovenia

Theoretical Background Report

Junior-advisors:

Maria M. de Boer Fieke M. Wermers

Senior-advisor:

Fenna A. van Nes

Date:

January 2005

Consultee:

Jelka Janša University Medical Centre Ljubljana, department Neurology

Institute:

Hogeschool van Amsterdam, department of occupational therapy

© Hogeschool van Amsterdam, department of Occupational Therapy All rights reserved. This report is protected by copyright. No part of this report may be reproduced in any other form or by any means, including photocopying, or utilized by any information storage and retrieval system without written permission from the copyright owner. Key words: Evidence-based practice Quality of Care Parkinson’s disease Implementation

Theoretical Background Report

CONTENT Preface ..................................................................................................................................4 Abstract ................................................................................................................................5 Introduction..........................................................................................................................6

PART I:

EVIDENCE-BASED PRACTICE ............................................... 8

Chapter 1:

Evidence-based practice ..............................................................................12

Chapter 2:

Occupational Performance Process Model .................................................18

Chapter 3:

Parkinson’s disease......................................................................................26

Chapter 4:

Question, search and judge .........................................................................29

Chapter 5:

Apply and evaluate ......................................................................................93

PART II: QUALITY OF CARE................................................................. 95 Chapter 6:

Quality of Care ............................................................................................99

Chapter 7:

Analyse, select and develop ...................................................................... 106

Chapter 8:

Judgement of actual care .......................................................................... 109

Chapter 9:

Determination of desired changes ............................................................. 121

Chapter 10: Analysis of sticking points regarding change............................................ 126 Chapter 11: Develop plans, adopt change and evaluate ............................................... 131

References......................................................................................................................... 135 Abbreviation ..................................................................................................................... 146 Appendix........................................................................................................................... 148

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PREFACE Broadened our mind, our perspective and our knowledge and much more, is what we have gained in this final project. Thanks to the effort of the people of the University College of Health Care (Slovenia), the Hogeschool van Amsterdam (The Netherlands) and the University Medical Centre Ljubljana, we had the opportunity to do our final project in the University Medical Centre Ljubljana. This project lasted from the 30th of August 2004 until the 28th of January 2005, of which we spend three months working in Ljubljana (Slovenia). By the initial of the occupational therapist of the department Neurology of the University Medical Centre Ljubljana, Jelka Janša, we have been involved in the occupational therapy practice of people with Parkinson’s disease. Evidence-based practice and Quality of Care were the main keywords in this project. For five months we have worked on this project with great pleasure. Many people have contributed to the development of this project. It could not have been produced and/or organised without their help. We would like to thank all persons that were involved in this project for their contributions. Hvala lepa Our special gratitude goes out to Jelka Janša, Zorana Sicherl, Katja Angleitner, Fenna van Nes, Katherine Deane, Els van Drimmelen, and all members of the department Neurology of the University Medical Centre Ljubljana. With kind regards, Maria de Boer and Fieke Wermers. Hogeschool van Amsterdam, department of Occupational Therapy Amsterdam / Ljubljana, January 2005

The road to success is always under construction

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ABSTRACT A step towards filling the gap Quality of Care and Evidence-based practice in the Occupational Therapy practice of people with Parkinson’s disease in the University Medical Centre Ljubljana, Slovenia Boer, de, M. M., & Wermers, F. M. Background: A final project, by two students from the Hogeschool van Amsterdam, department of Occupational Therapy (The Netherlands), has been carried out at the department Occupational Therapy of the department Neurology within the University Medical Centre Ljubljana (Slovenia). Purpose: The main aim of this project was to give an advise about the occupational therapy practice of people with Parkinson’s disease for the benefit of the quality of care, by using evidence extracted from literature as an improvement of the quality. The project is of appliance for the occupational therapy practice of the department Neurology within the University Medical Centre Ljubljana (Slovenia). Method: The Quality Cycle of Grol1 is used as a process model for the project. With the aim to give the project group a structure in the project and to visualise the process for the people involved. Step by step, this process model is passed through. To give content to one of the steps of the Quality Cycle ‘developing guidelines or goals for good care’, the method of Evidence-based practice is used to develop this ‘good care’. There is also used the Ishikawadiagram (also known as a Cause-and-Effect diagram) to structure and visualise the sticking points (this is an other step of the Quality Cycle), who are extracted by comparing the advises (ideal situation) and the current situation. This, for the benefit of the implementation of changes. Results: The products of the project are reflected in the form of two reports. The reports are: - Advice Report. The Advice Report contents the actual results of the project. This implies the outcomes of Evidence-based practice and the concrete advises for the occupational therapy practice of people with Parkinson’s disease in this particular setting. Also, by introducing a Quality Cycle, as an assistance for quality assurance is given. - Theoretical Background Report. The Theoretical Background Report describes the whole process of this project. Moreover, the theory and methods used, the choices that have been made and the references used in this project, are being reflected. This report is divided in two parts. Part one discusses Evidence-based practice and the process and outcomes of the literature research. Part two describes the whole quality of care process. Conclusions: There are concrete advises for the occupational therapy practice of people with Parkinson’s disease, based on evidence. In the advises, the specific setting has been taken into account for the benefit of the implementation. A Quality Cycle is introduced for the continuation, improvement and assurance of the quality of care. Moreover, there have been two presentation to pass on and to assign the information and the methods we have used. References: 1. Grol, R. T. P. M., Van Everdingen, J. J. E., & Casparie, A. F. (1994). Invoering van richtlijnen en veranderingen, Een handleiding voor de medische, paramedische en verpleegkundige praktijk. Utrecht: De Tijdstroom.

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INTRODUCTION The occupational therapy of the department Neurology within the University Medical Centre Ljubljana is a member of the multidisciplinary team of the department Neurology, regarding to the care of people with Parkinson’s disease. Next to the other members of the team, occupational therapy also provides service to people with Parkinson's disease. The people with Parkinson’s disease receive an inpatient and/or outpatient program. The occupational therapy department wants to implement quality of care by applying evidence-based practice in their occupational therapy practice with Parkinson’s disease. One of the reasons for this is that nowadays health care expects that these issues are been taken into account in daily practice. In this project we have carried out an (evidenced-based) literature research as a part of the Quality of Care process of the occupational therapy practice of people with Parkinson’s disease. We used the method of Evidence-based practice to develop good care as a part of the Quality Cycle of Grol (1994). The reason that we have chosen to divide the Theoretical Background Report in two parts is that Evidence-based practice, even though it is a part of the Quality of Care process, is a very important part of the whole product. To clarify and to bring forward the content and the process of this part of the project, we have decided to divide the part about Evidence-based practice and the part that consists the Quality of Care process. In our opinion, this will do good to the comprehensibility of the Theoretical Background Report. Part one: Evidence-based Practice The content of the first three chapters has the aim to inform the reader and will to give the requirements to understand the context of the project. This part begins with defining the term Evidence-based practice and explaining the methodological way of Evidence-based practice. After that we give some general information about the Occupational Performance Process Model (OPPM). We used the seven stages of the OPPM as a framework for the evidencebased literature research. The subjects of the literature research are classified within this process model. Also, some general information about Parkinson’s disease will be given. We will outline among other things the impairments and the course of the disease. In the following chapters of part one about Evidence-based practice, the results of the used method of Evidence-based practice will be presented. This starts with a chapter called: Question, search and judge. In this chapter the process and outcomes of the first three steps are being reflected: ‘Write down a clinical question’ (step 1), ‘Gather current published evidence that might answer the question’ (step 2), and ‘Evaluate the gathered evidence’ (step 3). The conclusions are the outcomes of our evidence-based literature research per stage of the OPPM. Most of the stages start with a clinical question(s) followed by the found evidence, a discussion and finally a conclusion. The second chapter there will be given attention to the last two steps of Evidence-based practice: ‘Application of the result in practice’ (step 4), and ‘Evaluate the process and the result’ (5). We have tried to encourage the implementation of the evidence that has been extracted from literature by given a presentation about (among other things) the use of the method of evidence-based practice.

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Part two: Quality of Care Part two starts by giving some general information about Quality of Care. Among other things, a description of Quality of Care, the Quality Cycle of Grol, and the Implementation Cycle, as a part of the process, will be outlined. The following chapters will give the results of the used Quality Cycle of Grol, step by step. Starting with a chapter about the first three steps: ‘Analysis of possible quality problems’, ‘Selections of subjects’ and ‘Developing guidelines or goals for good care’. In this chapter there will be referred to part one. The evidence as a conclusion out of our literature research are being used as ‘guidelines or goals for good care’. The next chapter contains the judgement of actual care. There will be given an impression of the Slovenian Health Care System, the Klinični Center Ljubljana, the department Neurology, and the department Occupational Therapy. After that, the current occupational therapy practice of people with Parkinson’s disease will be outlined per stage of the OPPM. After the ‘Judgement of actual care’ there is made a ‘Determination of desired changes’, by means of giving advises. These advises are reflected per clinical question and (again) classified per stage of the OPPM. The sticking points, that are ensued by the implementation of the advices, are developed and commented in chapter ten, by using the Ishikawa diagram (also known as a Cause-and-Effect diagram). The final chapter contains the last steps of the implementation cycle: ‘Development of strategies/plans for adoption change’, ‘Adoption of the change and the organization of this’ and finally ‘Follow-up: evaluation of the results’. We did not pass through these last three steps of the Quality Cycle in this project. Nevertheless, in this chapter we want to give the occupational therapists of the department some suggestions for a direction to complete the Quality Cycle by passing through these last three steps.

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PART I

EVIDENCE-BASED PRACTICE

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CONTENT

PART I: EVIDENCE-BASED PRACTICE Introduction........................................................................................................................11 Chapter 1: 1.1 1.2 1.3 1.4

Evidence-based practice ..............................................................................12 Introduction ...................................................................................................12 About evidence-based practice.......................................................................12 Importance of evidence-based practice...........................................................12 A methodological way of evidence-based practice .........................................13 1.4.1 Step 1: Write down a clinical question................................................13 1.4.2 Step 2: Gather current published evidence ..........................................14 1.4.3 Step 3: Evaluate the gathered evidence ...............................................15 1.4.4 Step 4: Application of the result in practice ........................................15 1.4.5 Step 5: Evaluate the process and the result..........................................15 1.5 General difficulty’s and benefits of evidence-based practice ..........................16 1.6 References .....................................................................................................16

Chapter 2: 2.1 2.2 2.3

Occupational Performance Process Model .................................................18 Introduction ...................................................................................................18 Process model................................................................................................18 About the OPPM ...........................................................................................18 2.3.1 Top-down versus bottom-up...............................................................19 2.3.2 Client-centred practice and the OPPM ................................................20 2.3.3 Reflective questions ...........................................................................20 2.4 The seven stages of the OPPM.......................................................................21 2.4.1 Stage 1: Name, Validate and Prioritise Occupational Performance Issues ....................................................................................21 2.4.2 Stage 2: Select Theoretical Approaches ..............................................21 2.4.2 Stage 3: Identify Performance Components and Environmental Conditions ....................................................................................22 2.4.3 Stage 4: Identify Strengths and Resources ..........................................22 2.4.4 Stage 5: Negotiate Targeted Outcomes and Develop Action Plans......22 2.4.5 Stage 6: Implement Plans Through Occupation ..................................23 2.4.6 Stage 7: Evaluate Occupational Performance Outcomes .....................23 2.5 References .....................................................................................................24

Chapter 3: 3.1 3.2 3.3 3.4 3.5

Parkinson’s disease......................................................................................26 Introduction ...................................................................................................26 About Parkinson’s disease: Function..............................................................26 About Parkinson’s disease: Impairments........................................................26 About Parkinson’s disease: Course of the disease ..........................................27 References .....................................................................................................27

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Chapter 4: Question, search and judge .........................................................................29 4.1 Introduction...................................................................................................29 4.2 Evidence-based practice.................................................................................29 4.2.1 Step 1: Write down a clinical question................................................29 4.2.2 Step 2: Gather current published evidence that might answer the question..............................................................................................30 4.2.3 Step 3: Evaluate the gathered evidence ...............................................30 Stage 1: Name, Validate and Prioritise Occupational Performance Issues 4.3 Clinical Question 1: COPM or an other narrative approach ............................31 Stage 2: Select Theoretical Approaches 4.4 Discussion: Conceptual Model.......................................................................40 Stage 3: Identify Performance Components and Environmental Conditions 4.5 Clinical Question 2: Assessment of Motor and Process Skills ........................43 4.6 Clinical Question 3: Parkinson’s disease Activity of Daily Living Scale ........46 4.7 Clinical Question 4: Self-assessment Parkinson Disability Scale....................48 4.8 Clinical Question 5: Assessing cognition .......................................................50 4.9 Clinical Question 6: Jebsen Hand Function Test ............................................55 4.10 Clinical Question 7: Modified Fatigue Impact Scale ......................................57 4.11 Clinical Question 8: Parkinson’s Disease Questionnaire-39 ...........................60 4.12 Clinical Question 9: Unified Parkinson’s Disease Rating Scale......................63 Stage 4: Identify Strengths and Resources 4.13 Clinical Question 10: Home-environment ......................................................68 4.14 Clinical Question 11: Caregiver .....................................................................71 4.15 Clinical Question 12: Multidisciplinary approach ..........................................76 Stage 5: Negotiate Targeted Outcomes and Develop Action Plans 4.16 Clinical Question 13: Referral........................................................................79 Stage 6: Implement Plans Through Occupation 4.17 Clinical Question 14: Cueing .........................................................................83 Stage 7: Evaluate Occupational Performance Outcomes 4.18 Clinical Question 15: Re-assessing COPM ....................................................87 4.19 Clinical Question: Follow-up .........................................................................91 Chapter 5: 5.1 5.2 5.3 5.4

Apply and evaluate ......................................................................................93 Introduction ...................................................................................................93 Step 4: Application of the result in practice....................................................93 Step 5: Evaluate the process and the result .....................................................94 Reference ......................................................................................................94

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INTRODUCTION - EVIDENCE-BASED PRACTICE This part of the Theoretical Background Report is about Evidence-based practice within in the occupational therapy practice of people with Parkinson's disease in the University Medical Center Ljubljana. Evidence-based practice is a important topic in health care these days, but what does it mean, how can you perform it, and what are the difficulty’s and benefits of Evidence-based practice? In the first chapter of this report will we will pursue this matter further. The second chapter is about the Occupational Performance Process Model (OPPM). We used the seven stages of the OPPM as a framework for the (evidence-based) literature research. The subjects of the literature research are classified within this process model. That is why we want to introduce this model and its content in this report. Chapter three will give some general information about the main aspects of Parkinson’s disease. We will outline (among other things) the impairments and the course of the disease. In the following chapters of part one about Evidence-based practice the results of the used method of Evidence-based practice will be presented. In the fourth chapter the first three steps of the used method of Evidence-based practice will be outlined, regarding to the content of this project. Starting with a description of our process in these steps: ‘Write down a clinical question’ (step 1), ‘Gather current published evidence that might aswer the question’ (step 2), and ‘Evaluate the gathered evidence’ (step 3). Followed by the outcomes of our literature research. The outcomes are divided per stage of the OPPM. Of each clinical question the evidence, a discussion and finally a conclusion is formulated. The conclusions are the outcomes of our (evidence-based) literature research. In the final chapter, chapter five, the last two steps of our used method of evidence-based practice are described: ‘Application of the result in practice’ (step 4), and ‘Evaluate the process and the result’ (step 5). We have tried to encourage the implementation of the evidence that has been extracted from literature by given a presentation about (among other things) the use of the method of Evidence-based practice.

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Chapter 1:

Evidence-based practice

§ 1.1 Introduction The purpose of this chapter is to give a clear picture about the concept ‘Evidence-based practice’. The reason for this comprehensive information is because the method of Evidencebased practice takes an important place in the used Quality Cycle of Grol (1994), the step where ‘Development of guidelines or goals for good care’ takes place. We have used the method of Evidence-based practice to work towards this step. This chapter will give some general information about and around evidence-based practice. After this, each of the five steps of evidence-based practice will be commented, concerning the content of that particular step. At the end the difficulties and benefits of evidence-based practice will be described.

§ 1.2 About Evidence-based practice The term ‘evidence-based medicine’ was coined at the Mc Master University medical school in the 1980s as a way of describing a process of problem-based clinical teaching and learning that involved students and clinicians in searching for, and evaluating, the evidence for practice (Bennet, et al., 1987; Shin, Haynes, & Johnston, 1993). Although evidence-based medicine is still a commonly used term, the evidence-based process has broadened and evolved and now evidence-based practice is sees as a more appropriate term (Taylor, 2000). Evidence-based practice has been defined by Sackett, Rosenberg, Gray, Haynes, & Richardson (1996) as: Integrating individual clinical expertise with the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients. The concern most frequently expressed about Evidence-based practice is that it will become prescriptive and will lead to cost cutting and ‘cook-book’ practice (Sackett et al., 1996) where there is one recognized, cheap, intervention for a specific problem. Sackett et al. (1996) argued strongly that Evidence-based practice is only a part of the clinical decision-making process and that any judgments and clinical decisions are based on the mix of clinical expertise and the best evidence. The aim is to ensure that the interventions used are the most effective and the safest options. External evidence is just one strand of the process and must be mixed with clinical judgment and patient preference (see figure: next page).

§ 1.3 Importance of Evidence-based practice According to Taylor (2000), the essence of Evidence-based practice is that the decision process is explicit and therefore clearly articulated so that decisions can be explained to the patient/client and justified to colleagues and managers. Evidence is gathered conscientiously but is used judiciously so that the experience of the occupational therapist, the needs of the patient/client, the demands of the system and the up-to-date best evidence are weighed Final Project – January 2005 Maria de Boer and Fieke Wermers

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together in order that the best care is given. Evidence-based practice is just one of the tool of clinical reasoning and reflective practice. However, because of the use of up-to-date- best evidence, evidence-based practice is a powerful tool. Figure: The elements of evidence-based practice

External evidence

Clinical judgement(s)

Principle(s) and preference patient

§ 1.4 A methodological way of Evidence-Based Practice Evidence-based practice is like a toolbox of methods available to the occupational therapy practitioner to aid clinical reasoning. The toolbox consists primarily of methods designed to integrate current and best evidence from research studies into the clinical reasoning process (Sackett, Richardson, Rosenberg, & Haynes, 1997). The occupational therapist integrates research into practice by carrying out the following five steps. The five steps of evidence-based practice: 1. Write down a clinical question. 2. Gather current published evidence that might answer the question 3. Evaluate the gathered evidence 4. Application of the result in practice 5. Evaluate the process and the result 1.4.1

STEP 1: Write down a Clinical Question

Write down a clinical question. The first step of involving and engaging in evidence-based practice is the developing of a clinical question relevant to the clinical population. Several authors, Offringa, Assendelft, & Scholten (2000) and Gray & Gray, (2002), apply the PICO-rule to formulate answerable questions. Final Project – January 2005 Maria de Boer and Fieke Wermers

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PICO is the abbreviation of the elements the question contains: •

• •

•

Person/problem: Describe your client and her/his problem. This may be a diagnosis or a functional or occupational performance. The description should also include all key information e.g. age, sex, occupational status. Intervention: Describe the main intervention. (Co-intervention): If applicable. Describe the comparative or alternative intervention. This may also take the form of alternative approaches to the intervention e.g. group or individual sessions; different frequency of intervention. Outcome: Describe what you hope to achieve or what effect the intervention may have on your client.

If the PICO-rule is applied at formulating a question, then all the relevant aspects are taken into consideration. Particularly a description of the outcome or the result is important to make the question concretely and clear. Taylor (2000) state that when one spends sufficient time on formulating the question, this can save time in the following steps because it becomes easier to find the correct proof that contributes to answering the question. 1.4.2 STEP 2: Gather current published evidence that might answer the question Gather current published evidence that might answer the question. The content of step two is to search to best literature (evidence) to answer the clinical question. In practice this implies: A. Select databases To choose the most appropriate database, you need to consider: - Whether the focus of the question is medical or broader. - Whether the focus of the search is occupational therapy-specific. - Whether the focus of the search will be on English literature or broader. - Whether the focus in on Randomised Controlled Trials or a wider methodological perspective. B. Set up a search strategy This implies: - Set up relevant keywords and the, in the correct manner, combining of these keywords. - Limiting the search operation by for example language, publication date and possibly the type of research. As we look at the evidence, we must hold in our minds a clear set of clinical questions for which we are seeking answers. Don’t look for evidence, which confirms the pre-existing beliefs and assumptions, but take great care in formulating these questions. It’s important to be open-minded and vigilant enough not to unconsciously look for "proof" of the benefits of the most favoured treatments, while being "less attentive to the greater benefits of a less fondly regarded intervention method. For searching evidence, the clinicians will identify and apply the most efficacious interventions to maximise the quality and quantity of life for individual clients. This means

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that the consequences of this concerning the cost of the care are not relevant in this step (Tickle-Degnen, 1999 1). 1.4.3 STEP 3: Evaluate the gathered evidence Evaluate the gathered evidence to determine what is the ‘best’ evidence for answering the question. The content of step three is to assess the literature that is found critical on validity and applicability. In practice this implies: A.

Reading the articles

B. Assessing the literature (levels of evidence) There is a hierarchy in evidence, what implies that one evidence has more value than the other. In the next row the “’best evidence stand at the top and the less valuable evidence below: I Systematic reviews and meta-analyses of randomised controlled trials II Randomised controlled trials III Non-randomised experimental studies IV Non-experimental studies V Respected opinion, expert discussion Note: Based on hierarchy by Moore, McQuay, & Gray (1995).

C. Using quotes that answer the question Evidence-based practice has also been defined as "client-centred enablement of occupation based on client information and a critical review of relevant research, expert consensus and past experience". Simply put, an evidence-based therapist is one who strives to find "the best possible answers, if not an exactly single correct one, in an apparently messy body of evidence". This means sifting through a variety of kinds of evidence, in search of what would be best practice for the client. The findings will be judged on validity and applicability. 1.4.4 STEP 4: Application of the result in practice Communicate with clients and colleagues about the evidence as evaluation and intervention decisions are being made during occupational therapy. The content of step four is the application of the found evidence in practice. At the implementation of evidence can be used models, which apply at introducing renewals in the care. In literature concerning quality of care we find for this several models. 1.4.5 STEP 5: Evaluate the process and the result Evaluate the chosen evidence-based evaluation and intervention procedures as they are implemented with clients and revising and individualising as appropriate. Evaluating changes in practice, step five, is an important step in the evidence-based process. A step, that gets frequently insufficient attention according to Grol (1994). In this phase the changes in practice are evaluated. A difference in evaluation has to be made between the product and the process. The product is the changing or innovation and the effect of it. For the process it is about the progress of the implementation. And after the effects can be related to the costs (for example invested time). Final Project – January 2005 Maria de Boer and Fieke Wermers

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§ 1.5 Difficulty’s and benefits of Evidence-based practice Whilst Evidence-based practice is a driving force in current health and social care, there are a number of barriers to the utilization of Evidence-based practice by occupational therapists. Some examples of general difficulty’s of evidence-based practice: - Access to, and availability of, information; - Limited time; - Lack of evidence-based practice skills (IT skills, literature searching skills and critical appraisal skills); - Confidence in the value of the evidence that is available; - Support from management and colleagues; - Conflict with the client-centred philosophy of occupational therapy. The benefits of Evidence-based practice have been outlined by Rosenberg and Donald (1995). Benefits for individual practitioners: - Enables practitioners to upgrade their knowledge base routinely; - Improves practitioners’ critical understanding of research methods and practice; - Improves confidence in management decisions; - Improves computer literacy and data searching skills; - Improves reading habit. Benefits for departments: - Gives a framework for group problem-solving and teaching; - Enables everyone to contribute to the team. Benefits for clients: - More effective use of resources; - Better communication with patients about the rationale behind intervention proposals. Whilst Evidence-based practice is too new within occupational therapy to have been evaluated, there is evidence from medicine of its effectiveness (Bennet, et al., 1987, Shin, et al., 1993).

§ 1.6 References -

-

Bennet, K. J., Sackett, D. L., Haynes, R. B., Neufeld, V. R., Tugwell, P., & Roberts, R. (1987). A controlled trial of teaching critical appraisal of the clinical literature to medical students. Journal of the American Medical Association, 257, 213-218. Canadian Association of Occupational Therapists, Association of Canadian Occupational Therapy University Programs, Association of Canadian Occupational Therapy Regulatory Organizations, and the President's Advisory Committee. (1999). Joint Position Statement on Evidence-based Occupational Therapy. Canadian Journal of Occupational Therapy. 66(5), 267-269. Egan, M., Dubouloz, C., Zweck, C., & Vallerand, J. (1998). The client-centred evidencebased practice of occupational therapy. Canadian Journal of Occupational Therapy. 65(3), 136-143. Gray, G. E., & Gray, L. K. (2002). Evidence-based medicine: applications in dietetic practice. Journal of American Dietetic Association, 102, 1263-1272.

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Grol, R. T. P. M., van Everdingen, J. J. E., & Casparie, A. F. (1994). Invoering van richtlijnen en veranderingen. Een handleiding voor de medische, paramedische en verpleegkundige praktijk. Utrecht: De Tijdstroom. Korteweg- van der Stoel, M. (2001). Reader Evidence Based Practice. Amsterdam: Hogeschool van Amsterdam. Kuiper, C., Verhoef, J., de Louw, D., & Cox, K. (2004). Evidence-based practice voor paramedici, methodiek en implementatie. Utrecht: Lemma. Moore, A., McQuay, H., & Gray, J. A. M. (1995). Evidence-based everything. Bandolier, 1, 1. Offringa, M., Assendelft, W. J. J., & Scholten R. J. P. M. (2000). Inleiding in evidencebased medicine. Klinisch handelen gebaseerd op bewijsmateriaal. Houten/Diegem: Bohn Stafleu Van Loghum. http://www.occupational-therapy.co.za/journal/archiveaug2000.html http://ot.curtin.edu.au/home/html/ebp/Default.html Rosenberg, W., & Donald, A. (1995). Evidence-based medicine: an approach to clinical problem-solving. British Medical Journal, 310, 1122-1126. Sackett, D. L., Richardson, W. S., Rosenberg, W., & Haynes, R. B. (1997). Evidencebased medicine: How to practice and teach EBM. New York: Churchill Livingstone. Sackett, D. L., Rosenberg, W. M. C., Gray, J. A. M., Haynes, R. B., & Richardson, W. S. (1996). Evidence-based medicine: what it is and what it isn’t. British Medical Journal, 312, 71-72. Shin, J. H., Haynes, R. B., & Johnston, M. E. (1993). Effect of problem-based, selfdirected undergraduate education on life-long learning. Canadian Medical Association Journal, 148, 969-976. Taylor, M. C. (2000). Evidence-Based Practice for Occupational Therapists. London: Blackwell Science. 1 Tickle-Degnen, L. (1999). Organising, evaluating and using evidence in occupational therapy practice. American Journal of Occupational Therapy. 53(5), 537-539. 2 Tickle-Degnen, L. (1999). Gathering Current Research Evidence To Enhance Clinical Reasoning. American Journal of Occupational Therapy, 54, 102-105.

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CHAPTER 2: Occupation Performance Process Model § 2.1 Introduction In this chapter information will be given about the Occupational Performance Process Model. The occupational therapists of the department Neurology within the University Medical Centre Ljubljana use this model as a model of practice in their occupational therapy practice. The purpose of this chapter is to give a clear picture about the Occupational Performance Process Model (OPPM). The reason for this comprehensive information about the OPPM, is because the OPPM takes an important place regarding the classification (and in some way also the content) of a large part of the project. The chapter gives some general information about and around the OPPM. After this, each of the seven stages will be commented, concerning the content of that particular stage.

§ 2.2 Process model What is a process model? There are different definitions used in practice. In our project we want to use the following definition: What we mean by a process model is a public (published), systematic manner of organising and application of knowledge, with the eventual aim to describe how a process of change can be passed off and to accomplish a aimed change (Thomas, 1998). In the occupational therapy most therapists use process models in their practice. Process models reflect how a process of change is possible passed through. Many process models are general of nature and have not been specifically developed for the occupational therapy. There can be talked of a cyclic- and of a linear-process, this will depend on the orientation of the aimed process of change. It will also depend in what kind of setting the occupational therapist is working, which (kind of) process model will be used (Thomas, 1998).

§ 2.3 About the OPPM The Occupational Performance Process Model (OPPM) is a process model that is used in the occupational therapy practice (Fearing & Clark, 2000). The Occupational Performance Process Model (OPPM) is a tool for developing a clientcentred occupational therapy practice. The model gives a way to think about the occupational therapy process (Fearing & Clark, 2000). In conclusion we can say that the OPPM is a process model that gives a way of thinking about the occupational therapy process. Such a model is also called a model of practice, because it gives specific guidance to the occupational therapy process. A model of practice helps occupational therapists to act therapeutically to change occupation.

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The Occupational Performance Process Model (OPPM) (see figure) is a process model that is based on core concepts of occupation and client-centred practice, that incorporates theoretical approaches, and can be applied to all clients. The process model coaches the occupational therapist through a client-centred problem-solving process. It represents a description or plan for occupational therapy assessment and intervention that leads to a collaborative approach to client-identified occupational performance issues. This model helps to articulate core concepts and values, and provides guidance for occupational therapy practice within changing environments and expectations (Fearing & Clark, 2000). Figure: A schematic review of the Occupational Performance Process Model (OPPM)

The seven-stage OPPM is a problem solving model designed to be used as a guideline for practice rather than a rule book. Although completion of the process should result in the resolution of problems, or new directions, the process itself is dynamic. Therapists and clients may choose to combine stages or alter their order, depending on the client. Since it is clientcentred, this process may be used by an interprofessional team to resolve client performance problems although resolution of occupational performance problems is the expertise of occupational therapists (Fearing, Law, & Clark, 1997). 2.3.1 Top-down versus bottom-up Next to the Occupational Therapy Intervention Process Model (Fischer, 2001), the Occupational Performance Process Model is also mentioned to be a true top-down approach. But what does that say about the OPPM?

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What is Top-down? A top-down assessment starts with inquiry into role competency and meaningfulness (and) further determines which particular tasks define each of the roles whether he or she can now do those tasks, and probable reasons for an inability to do so (Trombley, 1993). In the top-down approach, the foundational factors (performance skills, performance patterns, context, activity demands, and client factors) are considered later (Weinstock-Zlotnick & Hinojosa, 2004). What is Bottom-up? The bottom-up approach considers foundational factors first to obtain an understanding of the client’s limitations, real disabilities, and strengths. A bottom-up approach to assessment and treatment focuses on the deficits of components of function, such as strength, range of motion, balance, and so on, which are believes to be prerequisites to successful occupational performance of functioning (Trombley, 1993). An assumption inherent in the bottom-up approach is that acquisition or reacquisition of motor, cognitive, and psychological skills will ultimately result in successful performance of activities of daily living (Weinstock-Zlotnick & Hinojosa, 2004). 2.3.2 Client-centred practice and the OPPM Client-centred occupational therapy practice is an alliance formed between client and therapist to use their combined skills and strengths to work towards client goals related to occupational performance. Occupational therapy clients may be individuals, or group/systems such as families, caregivers, businesses, organizations, communities and governments (Fearing, et al., 1997). In the client-centred occupational therapy process, the therapist assists the client to problem solve so that lost momentum can be redirected into continuing satisfactory experience and development. This process requires a complex combination of knowledge and skills to enable the client to move through the stages required, to complete problem resolution or to undertake new directions. This process, initially identified by Fearing (1993), has been further developed as a seven stages process (Fearing, et al.,1997). This is the Occupational Performance Process Model. 2.3.3 Reflective questions Each client and practice situation raises unique questions. Nevertheless, a client-centred, occupation-focused practice is subject to questions that examine how occupation is kept in focus while collaborating with client. These reflective questions guide occupational therapists in using the Occupational Performance Process with clients and can stimulate thinking about application of the core concepts of the OPPM (Stanton, Thompson-Franson, & Kramer, 1997).

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§ 2.4 The seven stages of the OPPM The OPPM consists seven stages. Those seven stages follow each other up, but can also overlap while working in practice. The phase of exploration is the most comprehensive phase: stage one, three and four are focused on collecting information. In stage five the goals will be set and plans will be made for the therapy. The implementation of the plans and the evaluation will take place in stage six and seven (Dedding & Cardol, 2001). In this paragraph, there will be given some more specific information per stage of the OPPM. 2.4.1 Stage 1: Name, Validate and Prioritise Occupational Performance Issues The title of this stage cues the occupational therapist to three actions that are required to identify the occupational performance issues of importance to the client, and negotiate an agreement or contract that will guide subsequent process stages. Not all request for service require the assistance of an occupational therapist. Since this is an initial assessment stage, it serves to screen service requests. Whether a client is an individual or an organization, this screening function enables the client to judge whether or not an occupational therapy service would be of benefit. Similarly, it enables that occupational therapist to predict whether or not the available services would likely meet a client’s needs. This first stage of the process is extremely important. It sets the stage for the development of the collaborative, interdependent partnership in which the expertise of the client and the occupational therapist begin to be shared. If the process is not client-centred or focused on occupation at this point, occupational performance outcomes that are valued by the client are unlikely (Stanton, et al., 1997). Pertinent information about occupational performance is gathered with the client and others, for example family, community, etc. This may include an interview, use of the COPM, community visits, environmental assessments, etc. occupational performance issues are confirmed with the client, and then prioritised. If there are no occupational performance issues, the process ends (www.ot.utoronto.ca). 2.4.2 Stage 2: Select Theoretical Approach(es) In the second stage of the Occupational Performance Process Model (OPPM) there will be selected the theoretical approach(es). Occupation therapy theory provides us with ways of thinking about occupation and about the kind of things that can interfere with occupation. Theory is probably most easily understood as a tool for thinking (Fearing & Clark, 2000). Selecting a theoretical approach means selecting a conceptual system to guide and justify decisions throughout the process. Approach is a general term used here to include developing models, existing models and tested theories. Other terms used may be theory, model, framework, or paradigm, although each may have different interpretations in different situations (Fawcett & Down, 1992; Krefting, 1985; McColl, Law, & Stewart, 1993; Reed, 1984; Reed & Sanderson, 1992).

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Theoretical approaches guide actions and reasoning and assist in deciding how the assessment and intervention process should proceed. They also explain or predict how concepts work in practice. (McColl & Pranger, 1994) In doing so, they can be useful in explaining the relevance of an approach to clients, enabling them to participate as partners in the process (Stanton, et. al, 1997). 2.4.3 Stage 3: Identify Occupational Performance Components and Environmental Conditions At this third stage, the occupational therapist addresses the question: What occupational performance components and / or environmental conditions are contributing to the actual or potential occupational performance issue(s)? Occupational performance components are unique to each person, and are influenced by environmental conditions. The assessment process used to identify the components and conditions that influence occupational performance needs to be relevant to the environments in which the occupational performance is or will be occurring. Considering the context of the assessment, situation is extremely important in achieving accurate and meaningful results that will enhance decisionmaking and occupational therapy outcomes (Stanton, et al., 1997). Decisions about what the occupational therapist assesses and how one does it are guided by the theoretical approach that has been selected. Methods used to assess occupational performance components and environmental conditions can include: observations, a review of documents, standardized tools, etc. Findings are analysed as they relate to occupational performance (www.ot.utoronto.ca). 2.4.4 Stage 4: Identify Strengths and Resources The purpose of this stage is to summarize the client’s strengths and resources for resolving prioritised occupational performance issues. Typically, information gathered in the stages one and three is a source for identifying client strengths and resources and are summarized in an Occupational Profile (Stanton, et. al., 1997). Strengths can lie within any one of the three performance components: physical, cognitive or affective, while resources lie within any one of the four environmental conditions: physical, social, cultural, or institutional (www.ot.utoronto.ca). Some occupational therapy services may end at this stage if the agreement is for assessment but no action. In these situations, outcomes (stage five) need to be negotiated when prioritising occupational performance issues in stage one. In this stage, the strengths and resources of the occupational therapist are also considered to determine whether they are sufficient for the occupational therapist to enable the client to resolve the occupational performance issues (Stanton, et al., 1997). 2.4.5 Stage 5: Negotiate Targeted Outcomes, Develop Action Plan A targeted outcome is a more precise term for a goal. Targeted outcomes represent a client’s and occupational therapist’s best estimates of what may result from the occupational therapy.

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In client-centred practice, targeted outcomes are related to the occupations that the client wants to be able to do (Stanton, et al, 1997). That will say, priorities are determined in conjunction with the client, then targeted outcomes defined. The targeted outcomes should specify behaviours that can be observed and/or measured, and be realistic, understandable and achievable, interim or short-term goals/objectives can be developed, enabling the client to progress through graded steps. They should include the same features as the targeted outcome. Action plans are then developed to meet the targeted outcomes. Changes to the theoretical approach can be reviewed at this time, and changed if necessary. Action plans may include strategies to: develop, restore, maintain or promote occupational performance, or prevent occupational performance dysfunction. Action plans can be designed to enhance occupational performance components, for example increase knowledge about safety, increase muscle strength through meaningful occupations, and enhance communication skills. Or overcome environmental barriers, for example provide adaptations, purchase devices, seek funding for environmental changes, provide education to a corporation or system. Finally, action plans are finalized including determining location, schedule, frequency, materials, and estimated duration of implementation (www.ot.utoronto.ca). 2.4.6 Stage 6: Implement Plans Through Occupation Actions are implemented in accordance with the plan. The occupational therapist continually adapts and grades occupations to enable progress towards the targeted outcomes. Grading refers to the technique of categorizing tasks and activities according to their degree of difficulty or complexity (Reed & Sanderson, 1992). The occupational therapist recognizes that implementing the plan is a process of change for clients, and is sensitive to the issues that may arise for clients. Throughout implementation of the plan, occupational therapist monitors the client’s satisfaction with the process and outcomes, and makes changes to enhance satisfaction when needed (Stanton, et al., 1997). The extent to which all occupational performance issues are resolved, relative to the targeted outcomes, is assessed on an ongoing basis with each client. Even though a targeted outcome may remain the same, the methods for reaching the target may vary from day to day as conditions change. When changes are made, they are communicated to team members and others. The occupational therapist strives to ensure that the best methods available for resolving or minimizing the occupational performance issue(s) are used (www.ot.utoronto.ca). 2.4.7 Stage 7: Evaluate Occupational Performance Outcomes Before the occupational therapy service is completed, the occupational performance outcome(s) are reviewed to determine the effectiveness of the Occupational Performance Process. This stage is essential for demonstrating professional accountability. Changes in occupational performance and the process that contribute to change can be determined through evaluation. The importance of evaluating occupational performance outcomes cannot be over-emphasised (Stanton, et al., 1997).

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The occupational therapist determines whether targeted outcomes have been met by comparing targeted outcomes with actual outcomes. Evaluation may also measure the degree of change in occupational performance over time, or in different settings. Evaluation methods can include any or all of the methods used in stage three. The occupational therapist must also evaluate the process by documenting what was and was not done, with the reasoning for decisions. This may include who was involved, what actions took place, how occupational performance issues were prioritised, how theoretical approaches were selected, how strengths and resources in occupational performance were identified, and the availability of environmental resources and support services. If targeted outcomes have been met, the occupational performance process is complete, unless other occupational performance issues are identified. If the targeted outcomes have not been met, the process continues (www.ot.utoronto.ca).

§ 2.5 References -

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Dedding, C., & Cardol, M. (2001). Eigenwijs of op eigen wijze, De OPPM; een stappenplan voor client-centred practice. Nederlands Tijdschrift voor Ergotherapie. 29(2), 57-59. Fawcett, J., & Down, F. S. (1992). The relationship of theory and research. Philadelphia (PA): FA Davis. Fearing, V. G. (1993). Occupational therapists chart a course through the health record. Canadian Journal of Occupational Therapy. 60, 232-240. Fearing, V. G., Clark, J. (2000). Individuals in Context, A Practical Guide to ClientCentred Practice. Thorofare (USA): Slack Incorporated. Fearing, V. G., Law, M., Clark, J. (1997). An Occupational Performance Process Model: Fostering client and therapist alliances. Canadian Journal of Occupational Therapy. 64(1), 7-15. Fisher, A. G. (2001). AMPS Assessment of Motor and Process Skills, Volume 1: Development, Standardization, and Administration Manual. Colorado (USA): Three Star Press. Krefting, L. H. (1985). The use of conceptual models in clinical practice. Canadian Journal of Occupational Therapy. 52, 173-178. McColl, M. A., Law, M., & Stewart, D. (1993). Theoretical basis of occupational therapy: An annotated bibliography of applied theory in the professional literature. Thorofare (NJ): Slack Incorporated. McColl, M. A., & Pranger, T. (1994). Theory and practice in the occupational therapy guidelines for client-centred practice. Canadian Journal of Occupational Therapy. 61, 7277. http://www.ot.utoronto.ca/fw_evaluation_Case.asp Stanton, S., Thompson-Franson, T., & Kramer, C. (1997). Linking Concepts to a process for Working With Clients. In Townsend, E (Ed.), Enabling Occupation: An Occupational Therapy Perspective (pp 56-94). Ottowa: Canadian Association of Occupational Therapists Publications. Reed , K. L. (1984). Models of practice in occupational therapy. Baltimore (MD): Williams & Wilkins.

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Reed, K. L. & Sanderson, S. N. (1992). Concepts of occupational therapy. (3rd ed.) Baltimore (MD): Williams & Wilkins. Trombley, C. (1993). Anticipating the future: Assessment of occupational function. American Journal of Occupational Therapy. 47(3), 253-257. Weinsstock-Zlotnick, G., & Hinojosa, J. (2004). Bottom-Up or Top-Down Evaluation: Is one Better than the other? American Journal of Occupational Therapy. 58(5), 594-599.

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CHAPTER 3: Parkinson’s disease § 3.1 Introduction In this chapter information will be given about Parkinson’s disease. This is one of the diseases the occupational therapists of the department Neurology within the University Medical Centre Ljubljana are working with. The purpose of this chapter is to give a clear picture about Parkinson’s disease. The reason for this comprehensive information is because in this project it concerns all about people with Parkinson’s disease. This chapter will give information about the main aspects of Parkinson’s disease. The definition, cause, demographics, deficits and prognosis of Parkinson’s disease will come up for discussion.

§ 3.2 About Parkinson’s disease: Function Parkinson’s disease is a progressive degenerative disease, characterized by the degeneration of dopaminergic neurons in the substantia nigra, deep in the brain (Fox & Alder, 1999). Dopamine is an inhibitory neurotransmitter that greatly affects motor control. Clients with Parkinson’s disease experience a reduction of dopamine available within their Central Nerve System, which causes an imbalance between the inhibitory and the excitatory effects of the neurotransmitters used for motor control. The exact cause of Parkinson’s disease is unknown in most cases, although it can be caused in a few cases by toxic poisons or as sequel to a specific form of encephalitis.

§ 3.3 About Parkinson’s disease: Impairments As with the previously discussed conditions, all occupational areas can be affected by Parkinson’s disease. Clients often experience impairments in:

neuromusculoskeletal factors: - reflexes - muscle tone - strength - sort tissue integrity

motor skills: - gross coordination - fine coordination - motor control - endurance - postural control - alignment oral motor control

mental processes: - short-term - memory - perception

It is unclear exactly how Parkinson’s disease affects a client’s cognitive skills, but these changes are thought to be related to the connections of the substantia nigra to other areas of the cortex (Fox & Alder, 1999; Schultz-Krohn, Foti, & Glogoski, 2001). Final Project – January 2005 Maria de Boer and Fieke Wermers

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§ 3.4 About Parkinson’s disease: Course of the disease Parkinson’s disease is progressive, and there is no cure for it. Numerous medications can be used to slow the progression of the disease. These medications are generally dopamine agonists used to increase the amount of available dopamine within the Central Nerve System. Surgery may also used to reduce some of the motor manifestations, including tremor and rigidity. The average life span after diagnosis is 13 years; death is usually the result of heart disease or infection (Lundy-Elkman, 1998). Parkinson’s disease has been described as having five stages (Hoehn & Yahr, 1967) (see figure). These stages are broadly described by presence of symptoms and functional implications. Figure: The stages of Parkinson’s disease of Hoehn&Yahr Stage 1: Stage 2: Stage 3: Stage 4: Stage 5:

Unilateral symptoms, no or minimal functional implications, usually a resting tremor. Midline or bilateral symptom involvement, no balance difficulty, mild problems with trunk mobility and postural reflexes. Postural instability, mild to moderate functional disability. Postural instability increasing, though able to walk, functional disability increases interfering with ADL, decreased manipulation and dexterity. Confined to wheelchair or bed.

(Hoehn & Yahr, 1967) Initially, clients with a diagnosis of Parkinson’s disease often experience a tremor of the hand or foot that may be present only with intentional movement. As the disease progresses, the tremor may spread to include all extremities, as well as the trunk and head, and be present at all times or absent only during sleep. Clients experience increases in muscle tone, rigidity that may lead to cogwheeling (intermittent resistance to passive movement), decreased ability to initiative movement, disturbances in postural control and alignment, alterations in gait, fatigue and decreased control of motor output. The onset of the disease is usually gradual and generally occurs between the ages of 50 and 69 (Lundy-Elkman, 1998; Schultz-Krohn, et al., 2001). Besides the described symptoms there are also secondary symptoms. Some examples of secondary symptoms are depression, dementia and fatigue (Bosman, Jense, van der Linden, & Willems, 1996). The described symptoms lead to restrictions in occupation like during ADL and domestic tasks.

§ 3.5 References -

Bosman, A., Jense, M., Linden, van der, D., Willems, L. (1996). Thuiswonen met de ziekte van Parkinson, vanuit de ergotherapie bekeken. Project opleiding ergotherapie, Hogeschool van Amsterdam.

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Crepeau, B. E., Cohn, E. S., & Schell, B. A. (2003). Willard & Spackman’s Occupational Therapy. Philadelphia: Lippincott Williams & Wilkins. Fox, C. M., & Alder, R. N. (1999). Neurol mechanism of aging. In: H. Cohen. Neuroscience for rehabilitation (2nd edition). Philadelphia: Lippencott, Williams & Wilkins. Hoehn, M., & Yahr, M. (1967). Parkinsonism: Onset, progression, and mortality. Neurology, 17, 427-442. Lundy-Elkman, L. (1998). Neuroscience fundamentals for rehabilitaion. Philadelphia: Saunders. Schultz-Krohn, B., Foti, D., & Glogoski, C. (2001). Degenerative disease of the central nervous system. In: L. W. Pedretti & M. B. Early. Occupational Therapy practice skills for physical dysfunction (5th edition). St. Louis: Mosby. Trombley, C. A., & Radomski, M. V. (2002). Occupational Therapy for Physical Dysfunction. Baltimore: Williams & Wilkins.

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CHAPTER 4: Question, search and judge § 4.1 Introduction In this chapter we want to emphasize an important and big part of the question from our consultee: -

Develop and describe a new ‘evidence based’ occupational therapy program for clients with Parkinson, based on the existing program and adapted according the results of Evidence-based practice.

This chapter is a description of the content and process of the first three steps of the method of Evidence-based practice we have used for this project. Our aim is to give a reflection of the process of the development in the literature research that is done, concluded by the result of this research. The results of our literature research reflected in this chapter are subdivided in the following structure: ‘Preface’, ‘Clinical Question’, ‘Evidence’, ‘Discussion’, and ‘Conclusion’.

§ 4.2 Evidence-based practice The first three steps of evidence-based practice are: 1. Write down a clinical question. 2. Gather current published evidence that might answer the question 3. Evaluate the gathered evidence These three steps are the way we have used to carry out the literature research that is done. In this paragraph we want to explain our approach with regard to these steps of evidence-based practice. 4.2.1 Write down a Clinical Questions The first step of evidence-based practice is: ‘Write down a clinical question.’ For drawing up the clinical questions we have used the PICO-rule (see chapter one). We subdivided the clinical questions in: person, intervention, (co-intervention), and outcome. The aimed result of this literature research is that there is evidence found to be able to answer the clinical questions. This subjects of the clinical questions are determined in association with the consultee. The main intention of the project group was to establish questions that were most important to get answered concerning the consultee. The framework of the literature research The clinical questions are classified by the stages of the Occupational Performance Process Model (OPPM) (see chapter two). The reason that we have used the OPPM is because the OPPM is the process model the occupational therapists of the department Neurology use in their occupational therapy practice of (among others) people with Parkinson’s disease. This process model gives a good structure and passes through all the stages of practice. By using the OPPM, the most important questions are being drawn up of every stage of the practice. Final Project – January 2005 Maria de Boer and Fieke Wermers

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This resulted that there is at least one clinical question made that fits in a stage of the OPPM. In this way we have passes through all aspects of practice and extracting the subject with the most interest. 4.2.2 Gather current published evidence that might answer the question The search strategy we have used to search for literature is, broadly speaking, the following: - Selecting databases. We have (mostly) used the following databases: The Cochrane Library, CINAHL, Amed (Allied and complementary medicine database), and Pubmed (free accessible version of Medline). - Selecting keywords of relevance. The selection of this keywords we have done per clinical question. - Combining of keywords. While searching in a database we have been combining the keywords that were selected. - Restrict the search. Next to the use of the keywords, we have used one restriction in our literature research. All publications must be (originally) written in the English language. Next to the use of databases to find literature, we have also used the knowledge and information of the consultee to broaden our search. After finding some literature of interest as an abstract, we tried to get the publication in our possession. We have found publications in: - as a free PDF-file on the internet - in the library of the University of Health Care of Ljubljana - in the library of the Rehabilitation Centre Ljubljana - in the library of the University Medical Centre Ljubljana - from the consultee We have also used the articles that were given by the project group Parkinson (Best, Kok, Sinnema, & Winder, 2004). The project group Parkinson conducted a literature research with the phrasing: ‘How in national and international literature is the occupational therapy practice (however, evidence-based practice or not) of clients with Parkinson’s disease.’ 4.2.3 Evaluate the gathered evidence After reading the articles through, the literature is being assessed. Some evidence found is stronger evidence than other. That means for example that, some evidence is more convincing than others, because of the type of the study that is done. Or some evidence has a larger degree of resemblance with the clinical question than others. The consequence of this is that we have tried to reflect this differences in level of evidence in the discussion and conclusion per clinical question. The evidence was extracted from the literature by using quote’s from the article itself. In most cases this was a part of the conclusion and/or the discussion of the publication. To be able to make a conclusion as a result of the literature that was read, a discussion is made out of the evidence and other related literature. Note: In some cases, when the article could not be found, the abstract is used in the discussion and conclusion. In that case, this is always mentioned in the list of references at the end of each subject. Final Project – January 2005 Maria de Boer and Fieke Wermers

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Stage 1: Name, Validate and Prioritise Occupational Performance Issues Occupational performance issue(s) related to self-care, productivity and leisure occupations are named, validated and prioritised with the client. When no issues are identified, the process ends (Stanton, Thompson-Franson, & Kramer, 1997). § 4.3 Clinical Question 1: COPM or an other narrative approach Preface: The occupational therapists of the department Neurology in the University Medical Centre Ljubljana use the Canadian Model of Occupational Performance (COPM) (DNHW & CAOT, 1990) as a way to assess occupational performance issues of people with Parkinson’s disease. When it is for some reason not possible to take off the COPM they use a narrative approach called therapeutic emplotment. The occupational therapists want to know if there is evidence for using the COPM and/or using that narrative approach in the occupational therapy practice with people with Parkinson’s disease. Clinical practice requires occupational therapists to develop individualized understandings of patients, the meaning to them of their impairments, their experiences of treatment, and possibilities for reconstructing their occupations, selves, and lives (Fleming, 1991 1,2). Person/problem People with Parkinson’s disease

Intervention Using the COPM

Co-intervention Using a narrative approach called therapeutic emplotment

Outcome To assess occupational performance issues and create a clientcentred approach

Clinical Question: What is the evidence for the value of using the COPM in comparison with using a narrative approach called therapeutic emplotment as a means to assess occupational performance issues and create a client-centred approach for people with Parkinson’s disease? Evidence: COPM There is some evidence found about the use of COPM with people with Parkinson’s disease: Including the COPM with a battery of other tests improves the effectiveness of an assessment for clients with Parkinson’s disease (Gaudet, 2002). The COPM can be used in the context “to administer with people with Parkinson’s disease in both the on- and off- states, experienced by those with fluctuating and later stage Parkinson’s disease” and meets several criteria of scientific rigour. It has moderate reliability and validity (content, construct and criterion). It also has a well-developed manual. The COPM is a standardized evaluation, cost effective, easy to administer, an outcome measure, client-centred and sensitive to change. It can be administered to any disability group and is well grounded in occupational therapy theory as it is based on the Canadian Model of

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Occupational Performance (Canadian Association of Occupational Therapists, 1997; Law, et al., 1994; Law, et al., 1998) (Gaudet, 2002). Perceptions of improved performance and satisfaction are the very domains measured by the COPM. However, the COPM is not without its limitations: it is not a performance-based evaluation, no ordinal data is generated and it is not criterion referenced (Gaudet, 2002). With those who have fluctuating Parkinson’s disease, the identification of issues must be scored separately for both the on and off states (ensuring that the same issues are scored for both states) (Gaudet, 2002). There are indications that the Canadian Occupational Performance Measure (COPM) can be used during the occupational therapy treatment with people with Parkinson’s disease (Best, Kok, Sinnema, & Winder, 2004). From a qualitative research, conducted by the project group (Best, et al., 2004), came up that the COPM at the diagnostic stage is not sufficient for the whole data collection. An narrative approach There is no evidence found concerning the part about narrative approach of this particular question. Discussion: In this discussion we want to mention some other information that, in our opinion, can be related to the question. COPM In a systematic review of the emerging research and clinical literature related to the COPM (Carswell, et al., 2004), as a means to determine whether the COPM is psychometrically robust and a clinically useful outcome measure in occupational therapy, there is some relevant evidence found about the psychometric properties and the clinical utility of the COPM: Psychometric properties of the COPM, reliability: - A study with a population of 26 post-stroke patients (Cup, Scholte op Reimer, Thijssen, & van Keyk-Minis, 2003) showed that test-retest reliability is moderate for item pool and is strong for performance and satisfaction. Psychometric properties of the COPM, validity: - A study with a population with patients with orthopaedic and post-stroke (Chan & Lee, 1997) showed that the COPM is successful in measuring occupational performance (vs. components). COPM does not measure the same aspects as the Klein-Bell-ADL or the Functional Independence Measure (FIM). - A study with a population of 26 post-stroke patients (Cup, et al., 2003) showed that discriminate validity confirmed, many unique problems can be evaluated. Psychometric properties of the COPM, responsiveness: - A study with a population of 27 occupational therapists (Wressle, Samuelsson, & Henriksson, 1999) showed that therapists report the COPM enables them to demonstrate meaningful change in clients and in facilitate team planning. - A study with a population of 15 people of a residential, multidisciplinary, rehabilitation program (Lewis & Jones, 2001) showed that the COPM is more Final Project – January 2005 Maria de Boer and Fieke Wermers

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sensitive to change than measures of general health (Short Form 36 and Health Assessment Questionnaire) and had the lowest coefficient of variation. A study with a population of 12 people of a neuro rehabilitation program (Chen, Rodger, & Polatajko, 2002) showed that both mean change scores on performance and satisfaction are clinically and statistically significant on the COPM and the Reintegration to Normal Living Index.

Clinical utility of the COPM: - Subjects and significant others were aware of progress. Clients with a goal-specific program of occupational therapy improved. COPM is a strong measure for determining client chosen goals (Trombly, Radomski, & Davis, 1998). - COPM is a useful outcome measure for a neuro rehabilitation unit (Bodiam, 1999). - COPM is useful in helping caregivers to identify occupational performance issues for themselves and for the person for whom they were caring (McGrath, Meuller, Brown, Teitelman, & Watts, 1999). - Using the COPM gave therapists insight into their client’s needs. Enables more goaldirected interventions, enhances the therapeutic relationships, and enables a partnership between the therapist and the clients in early therapy (Chen, et al., 2002). - Using the COPM to enable clients to participate in goals setting and in developing goal-specific occupational therapy significantly improves occupational therapy outcomes (Trombly, Radomski, Trexel, & Burnet-Smith, 2002). - COPM engages clients in the therapeutic process from the beginning and becomes an active participant in the rehabilitation process (Wressle, Marcusson, & Henriksson, 2002). - COPM is an outcome measure capable of crossing cultural boundaries and allowing for the comparison of interventions (Landi, Mucahey, Caserta, & Rosa, 2003). - COPM is an effective outcome measure in an early intervention, multidisciplinary team (Lyons & Raghavendra, 2003). More evidence, not mentioned in the systematic review above, about the validity of the COPM: The COPM was not considered to be useful for clients with one clear problem in the field of activity, since they have already indicated their goal. However, in clinical practice the scoring for performance and satisfaction for that particular problem can still be useful, since this reflects the perception of the client and offers the possibility to detect change from the client’s point of view (Dedding, et al., 2004). In general, the COPM is experienced as a very helpful tool with which bring the theory of the client-centred approach into practice. This can only be achieved when the therapist is trained in the principles of client-centred practice and has been trained to administer the semistructured interview. Moreover, introduction of the COPM in a multidisciplinary team demands reconsideration of current clinical practice, since this can be in conflict with the principles of client-centred practice (Dedding, Cardol, Eyssen, Dekker, & Beelen, 2004). The COPM provides information that cannot be obtained with current standardized instruments to measure health. Its strengths lies in the self-rating of any activity of importance, leading to an open dialogue between client and therapist about expectations and

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treatment outcomes. The results of this study provide supportive evidence for the convergent and divergent validity of the COPM (Dedding, et al., 2004). An narrative approach There is some information found about the use of narrative data in occupational therapy: The essence of client-centered care in occupational therapy is setting goals that are individually relevant (Law, 1998; Townsend, 1997). To do so, therapists must collaborate with clients and understand their priorities. Neistadt and Seymour’s (1995) national survey of occupational therapists in adult physical disabilities treatment settings found that those respondents who used the most extensive formal assessment of client priorities used more occupational relevant intervention strategies than did the other respondents. Unfortunately, these occupationally orientated respondents represented only 2% of the facilities in the survey. Most survey respondents (57%) reported that they used an interview to assess client priorities (Simmons, Blesedell-Crepeau, & Prudhomme-White, 2000). Because few occupational therapy assessments include the environment or social role expectations of clients (Pollock, 1993), occupational therapists may not have the necessary assessments instruments to support a client-centered approach, evaluations are needed that elicit narrative data to identify the valued occupations of individuals and estimate the impact of illness or disability on these occupations. The Canadian Occupational Performance Measure (COPM) (Law, Baptiste, Carswell, McColl, Polatajko, & Pollock, 1994) is one example of an instrument that meets these requirements (Simmons, et al., 2000). Typical evaluation practices in settings for clients with physical disabilities focus primarily on performance component issues within a mechanistic paradigm (Fisher, 1998; Law, 1993; Mathiowetz, 1993; Neistadt & Atkins, 1996; Wood, 1998). The occupational therapy assessment used at East Rehab Two, the site of this research, is an example of this type of practice. The assessment consists of a brief client biography followed by sections in which to record upper extremity range motion, basic activities of daily living, cognition, and visual perception function (Simmons, et al., 2000). Research in clinical reasoning suggest that narrative data may be important for understanding the life stories of clients (Clark, 1993; Mattingly, 1991; Schwartz, 1991), and may be helpful in determining mutually agreed upon goals for clients (Simmons, et al., 2000). Use of the COPM enhances accuracy in prediction of discharge scores after rehabilitative services for persons in adult physical disabilities settings. Assessment such as the COPM may enable therapists to better understand their clients as occupational beings and with this understanding may more accurately predict the outcome of occupational therapy intervention. Demonstrating the effectiveness of occupational therapy tools such as the COPM in accurately predicting outcomes should be advantageous to occupational therapy clients as well as to our profession (Simmons, et al., 2000). Clinical practice, implicitly or explicitly, involves constructing and interpreting the patient’s life history, a chronological narrative that identifies and make sense of important events in the patient’s life. Differences between patient’s and occupational therapist’s constructions of the life story must be recognized (although not necessarily eliminated) to allow for a productive therapeutic encounter (Frank, 1995). Final Project – January 2005 Maria de Boer and Fieke Wermers

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The clinical usefulness of narratives is gaining increasing recognition in several health care professions, including medicine (Coles, 1989; Kleinman, 1988), nursing (Robinson, 1993; White & Epston, 1990), and occupational therapy (Clark, 1993; Helfrich & Kielhofner, 1994; Helfrich, Kielhofner, & Mattingly, 1994; Mattingly, 1991; Mattingly & Fleming, 1994; Peloquin, 1993). Narratives or life stories are based on the idea that although one’s life may have periods, or chapters, in which the plot takes different directions, the overall story has a cohesive quality over time. Narrative is thus a way of thinking about change in which the future is connected to, and evolves from, the past (Spencer, et al., 1996). Occupational therapy practitioners usually see clients at times of crisis or major life change when one chapter in their life story is ending and another is beginning. In his reflections on the study of life history, the anthropologist Mandelbaum (1973) called these changes turnings. Helping clients make these turnings, or shifts from one chapter to another, is a crucial aspect of practice (Spencer, et al., 1996). The concept of adaptation provides insight into what happens when chapters end and begin in a person’s life story. Two aspects of this concept are particularly relevant to examination of major life change. First, adaptation is an interactive process that occurs between an organism and its environment. Second, adaptation is an inherently cumulative process in which the past shapes the future. Our examination of the use of past experience in occupational adaptation is based on the metaphor of an adaptive repertoire. Ways in which a repertoire is developed and used can be examined through three premises based on fundamental components of the concept of adaptation (Spencer, et al., 1996): 1. The environment; Occupations are enacted not as disjointed activities, but as forms or performances that are combined in meaningful configurations and attached to particular contexts or local words. 2. The person; Learning occupational forms leads to cumulative development of an adaptive repertoire, or a stock of parts we know how to play that allows us to perform in ways that are both competent and appropriate. 3. Process of change; Major changes in the relationship between person and environment prompt appraisal of new situations, reconsideration of the relevance of our adaptive repertoire, and reconfiguration of old performances and new capabilities into new adaptive patterns. There is some information found about a narrative approach: Broadly defined, the life history is a narrative approach in which empirical methods are used to reconstruct and interpret the lives of ordinary persons. Life histories, as a genre, can include: - Case History; Narrative focused on a clinical problem, course of treatment, and outcome. May contextualize the clinical problem in terms of the person’s daily life and personal identity. - Life-Chart; Linear diagram of the patient’s life, year by year from birth, indicating key life events and suggesting possible relationships over time to illnesses and impairments. - Life History; Narrative of a person’s life over time from birth. Stresses coherence of personality development and adaptation within a particular culture. Life story

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naturalistically unfolds, although the organization could be topical as well chronological. - Life Story; A temporally discontinuous discourse unit that includes all the stories persons tell in which the point is about themselves. Analysis usually is based on topics, fragments, or short versions of person’s life story. - Hermeneutic Case Reconstruction; A kind of narrative analysis for comparing the life history (actual events) with the life story as an account. - Therapeutic Emplotment; A narrative interpretation of clinical practice in which patients and occupational therapists are viewed as characters who together create an unfolding story (Frank, 1995). Life history methods are likely to be useful and necessary as long as persons want their life stories to be heard and understood by others. Listening is both a creative act and a political one. It involves participation in an ongoing exchange between the clinician and patient are the researcher and subject as well as with their relevant communities (Dossa, 1994; Gottlieb, 1995) (Frank, 1995). In applying a life history approach, it is inevitable that clinicians (like researchers) will sometimes question, disagree with, or not understand parts of the life story that a patient might initially bring to or enact in therapy. It is important for clinicians to keep track of whose story it is- that is , who is making the points and evaluations- and to have the skills to listen for and engage with new versions, new interpretations, and new tellings. These skills can enrich the dialogues and interactions through which occupational therapists work to facilitate positive changes in their patients’ lives (Frank, 1995). There is some information found about therapeutic emplotment: Therapeutic emplotment (Mattingly 1991, 1994) is a narrative method used in clinical reasoning to understand patients; lives as a process of moving toward future possibilities that are not yet fully formulated. Therapeutic emplotment requires the clinician to gather retrospective data to make interpretations about who individual patients are, where they have come from, and where they might be going (Frank, 1995). Conclusion: There is no evidence found for the value of using the COPM in comparison with using a narrative method called therapeutic emplotment as a means to assess occupational performance issues and create a client-centred approach for people with Parkinson’s disease. In conclude of the information we found in literature we can say that there are indications that the Canadian Occupational Performance Measure (COPM) can be used during the occupational therapy treatment with people with Parkinson’s disease. The COPM facilitates occupational therapists to focus on client needs, to develop meaningful intervention strategies and to demonstrate concrete and significant change scores attributable to occupational therapy practice. Since its development and publication, the COPM has become an accepted outcome measure for occupational therapists. It is the subject of both empirical and descriptive papers, which espouse the COPM as a reliable, valid, clinically useful, and responsive outcome measure that can be used to provide empirical evidence of the effectiveness of client-centred

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occupational therapy intervention as well as a basis for occupational therapy outcomes research. There is no evidence found about the value of the specific narrative approach the therapeutic emplotment. But in general, research in clinical reasoning suggest that narrative data may be important for understanding the life stories of clients and may be a helpful in approach determining mutually agreed upon goals for clients. References: - Best, B., Kok, J., Sinnema, G., & Winder, E. (2004). De ergotherapeutische behandeling van cliënten met de ziekte van Parkinson, een eerste concept richtlijn. Amsterdam: Hogeschool van Amsterdam/ Nijmegen: UMC St. Radboud.. - Bodiam, C., (1999). The use of the Canadian Occupational Performance Measure for the assessment of outcome on a neuro-rehabilitation unit. British Journal of Occupational Therapy, 62, 123-126. - Canadian Association of Occupational Therapists. (1997). Enabling Occupation: An Occupational Therapy Perspective. Ottawa: CAOT Publications ACE. - Carswell, A., McColl, M. A., Baptiste, S., Law, M., Polatajko, H., & Pollock, N. (2004) The Canadian Occupational Performance Measure: A research and clinical literature review. Canadian Journal of Occupational Therapy, 71, 210-222. - Chan, C. C. H., & Lee, T. M. C. (1997). Validity of the Canadian Occupational Performance Measure. Occupational Therapy International, 4, 229-247. - Chen, Y. H., Rodger, S., & Polatajko, H. (2002). Experiences with the COPM and clientcentred practice in adult neurorehabilitation in Taiwan. Occupational Therapy International, 9, 167-184. - Clark, F. (1993). Occupational embedded in a real life: Interweaving occupational science and occupational therapy. 1993 Eleanor Clarke Lecture. American Journal of Occupational Therapy, 47, 1067-1078. - Coles, R. (1989). The call of stories: Teaching and the moral imagination. Boston: Houghton Mifflin. - Cup, E. H., Scholte op Reimer, W. J., Thijssen, M. C., & van Keyk-Minis, M. A. (2003). Reliability and validity of the Canadian Occupational Performance Measure in stroke patients. Clinical Rehabilitation, 17, 402-409. - Dedding, C., Cardol, M., Eyssen, I. C., Dekker, J., & Beelen, A. (2004). Validity of the Canadian Occupational Performance Measure: a client-centred outcome measurement. Clinical Rehabilitation, 18, 660-7. - Dossa, P. A. (1994). Critical anthropology and life stories : Case study of elderly Ismaili Canadians. Journal of Cross-Cultural Gerontology, 9, 335-354. - 1 Fleming, M. H. (1991). Clinical reasoning in medicine compared with clinical reasoning in occupational therapy. American Journal of Occupational Therapy, 45, 988-996. - 2 leming, M. H. (1991). The therapist with the three-track mind. American Journal of Occupational Therapy, 45, 1007-1014. - Fishter, A. G. (1998). Uniting practice and theory in an occupational framework. American Journal of Occupational Therapy, 52, 509-521. - Frank, G. (1996). Life histories in occupational therapy clinical practice. The American Journal of Occupational Therapy, 50, 251-264. - Gaudet, P. (2002). Measuring the impact of Parkinson’s disease: An occupational therapy perspective. Canadian Journal of Occupational Therapy, 66, 104-113.

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Gottlieb, A. (1995) Beyond the lonely anthropologist: Collaboration in research and writing. American Anthropologist, 97, 21-25. Helfrich, C., & Kielhofner, G. (1994). Volitional narratives and the meaning of therapy. American Journal of Occupational Therapy, 48, 319-326. Helfrich, C., Kielhofner, G., & Mattingly, C. (1994). Volition as narrative: Understanding motivation in chronic illness. American Journal of Occupational Therapy, 48, 311-317. Kleinman, A. (1988). The illness narratives: Suffering, healing and the human condition. New York: Basic. Landi, A., Mucahey, M. J., Caserta, G., & Rosa, N. (2003). Tetraplegia: Update on assessment. Hand Clinics, 18, 377-389. Lyons, T., & Raghavendra, P. (2003). Therapist’s views on the usability of Canadian Occupational Performance Measure for an early intervention group by a multidisciplinary team: A pilot study. Retrieved from http:\\Zeus\commercial\conventions\2003\allied health\speak chair\posters\lyons terry.doc Law, M. (1993). Evaluating activities of daily living: Directions for the future. American Journal of Occupational Therapy, 47, 233-237. Law, M. (1998). Client-Centered Occupational Therapy. Thorofare, NJ: Slack, Inc. Law, M., Baptiste, S., Carswell, A., McColl, M. A., Polatajko, H., & Pollock, N. (1994). Canadian Occupational Performance Measure. Toronto: CAOT Publications. Law, M., Baptiste, S., Carswell, A., McColl, M. A., Polatajko, H., & Pollock, N. (1998). Canadian Occupational Performance Measure, (3rd ed.). Ottawa: CAOT Publications ACE. Law, M., Polatajko, H., Pollock, McColl, M. A., Carswell, A., & Baptiste, S. (1994). Pilot testing of the Canadian Occupational Performance Measure: Clinical and measurement issues. The Canadian Journal of Occupational Therapy, 61, 191-197. Lewis, J., & Jones, P. (2001). Measuring handicap in rheumatic disease: Evaluation of the Canadian Performance Measure. ARHP Annual Meeting, 45, 90. Mandelbaum, D. (1973). The study of life history: Gandhi. Current Anthropology, 14, 177-206. Mathiowetz, V. (1993). Role of performance component evaluations in occupational therapy functional evaluation. American Journal of Occupational Therapy, 47, 225-230. Mattingly, C. (1991). The narrative nature of clinical reasoning. American Journal of Occupational Therapy, 45, 998-1005. Mattingly, C. (1994) The concept of therapeutic “emplotment”. Social Science in Medicine, 38, 811-822. Mattingly, C., & Fleming, M. (1994). Clinical reasoning: Forms of inquiry in a therapeutic practice. Philadelphia: F. A. Davis. McGrath, W. L., Meuller, M. M., Brown, C. B., Teitelman, J., & Watts, J. (2000). Caregivers of persons with Alzheimer’s Disease: An exploratory study of occupational performance and respite. Physical and Occupational Therapy in Geriatrics, 18, 51-69. Neistadt, M. E., & Atkins, A. (1996). Analysis of the orthopedic content in an occupational therapy curriculum from a clinical reasoning perspective. American Journal of Occupational Therapy, 50, 669-675. Neistadt, M. E., & Seymour, S. G. (1995). Treatment activity preferences of occupational therapists in adult physical dysfunction settings. American Journal of Occupational Therapy, 49, 437-443. Peloquin, S. M. (1993). The depersonalization of patients: A profile gleaned from narratives. American Journal of Occupational Therapy, 47, 830-837.

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Pollock, N. (1993). Client-centered assessment. American Journal of Occupational Therapy, 47, 298-301. Robinson, C. (1993). Managing life with a chronic condition: The story of normalization. Qualitative Health Research, 3, 6-28. Schwartz, K. B. ((1991). Clinical reasoning and new ideas on intelligence: Implications for teaching and learning. American Journal of Occupational Therapy, 45, 1033-1037. Simmons, D. C., Blesedell-Crepeau, E., & Prudhomme-White B. (2000). The Predictive Power of Narrative Data in Occupational Therapy Evaluation. The American Journal of Occupational Therapy, 54, 471-476. Spencer, J. C., Davidson, H. A. & White, V. K. (1996). Continuity and change: past experience as adaptive repertoire in occupational adaptation. The American Journal of Occupational Therapy, 50, 526-534. Stanton, S., Thompson-Franson, T., & Kramer, C. (1997). Linking Concepts to a process for Working With Clients. In Townsend, E (Ed.), Enabling Occupation: An Occupational Therapy Perspective (pp 56-94). Ottowa: Canadian Association of Occupational Therapists Publications. Trombly, C. A., Radomski, M. V., & Davis, E. S. (1998). Achievement of self-identified goals by adults with traumatic brain injury: Phase I. American Journal of Occupational Therapy, 52, 810-818. Trombly, C. A., Radomski, M. V., Trexel, C., & Burnet-Smith, S. E. (2002). Occupational therapy and achievement of self-identified goals by adults with traumatic brain injury: Phase II. American Journal of Occupational Therapy,56, 489-498. Wood, W. (1998). It is jump time for occupational therapy. American Journal of Occupational Therapy, 52,403-410. White, M., & Epston, D. (1990). Narrative means to therapeutic ends. New York: Norton. Wressle, E., Samuelsson, K., & Henriksson, C. (1999). Responsiveness of the Swedish version of the Canadian Occupational Performance Measure. Scandinavian Journal of Occupational Therapy, 6, 84-89. Wressle, E., Marcusson, J., & Henriksson, C. (2002). Clinical utility of the Canadian Occupational Performance Measure- Swedish version. Canadian Journal of Occupational Therapy, 69, 40-48.

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Stage 2: Select Theoretical Approaches When an occupational performance issue is named, validated and given priority, the occupational therapist selects, with client input, one or more theoretical approach(es) that will guide the remaining stages of the process (Stanton, Thompson-Franson, & Kramer, 1997). § 4.4 Discussion: Conceptual Model Preface: The occupational therapists of the department Neurology in the University Medical Centre Ljubljana use the Conceptual Model of AMPS as a way of reasoning about occupation in their practice. The therapists want to know if there is evidence for using this conceptual model in the occupational therapy practice with people with Parkinson’s disease. It is not possible to convert this question of the occupational therapists into clinical question. This is the reason that there is chosen for a discussion in this stage of the OPPM, because we find this subject important to mention in this so-called ‘silent- stage. As occupational therapists it is important to have a way of thinking about and to understand the person as a whole. Conceptual models guiding occupational therapy practice emphasise the transactional relationships between individuals, their occupations and the environments in which they live (Law, Polatajko, Baptiste, & Townsend, 1997; Law, et al., 1996). For the occupational therapy practice it is necessary to gain a comprehensive understanding of the nature of interconnections between the environment, occupation, and disability (O’Brien, Dyck, Caron, & Mortenson, 2002). Discussion: In the literature, there is some information found about the approach in the occupational therapy practice of people with the Parkinson’ Disease: People with the Parkinson’s disease demand a holistic approach to treatment. Both pharmacologic and nonpharmacologic interventions play an important role in the comprehensive management of people living with Parkinson’s disease (Martin & Wieler, 2003). Occupational therapists agreed that best practice is not based on a specific ‘named’ approach and that addressing the social and psychological needs of people with Parkinson’s disease is as important as addressing their physical needs (Deane, Ellis-Hill, Dekker, Davies, & Clarke, 2003). There is not much literature found about the use of conceptual models in the general occupational therapy practice. But what we want to mention in this discussion is the following: Occupational therapy research is needed to examine the complex relationship among person, environment, and participation in occupations. In practice and education, knowledge about participation can enhance the client-centred and evidence-based nature of occupational Final Project – January 2005 Maria de Boer and Fieke Wermers

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therapy services (Law, 2002). The paper of O’Brien et al. (2002) deliberates about the limitations of the recent occupational therapy conceptual models regarding the environment. The importance of social sciences in developing occupation therapy theory is recognized (Jones, Blair, Hartery, & Jones, 1998), including development an understanding of links between disability experience, and environment. Concepts from other disciplines, such as sociology and social geography, can be useful in broadening the understanding of interconnections between environment and occupational performance and so are important to the ongoing development of occupational therapy’s knowledge base. Occupational therapists need to integrate these additional perspectives into current clinical practice, as well as the theories that guide practice, so that we may be able to better understand and support our clients (O’Brien, et al., 2002). Conclusion: Concerning the occupational therapy treatment of people with Parkinson’s disease there is not known a specific approach. The needs of the person with Parkinson’s disease does although demands a holistic approach. There are indicators that occupational therapy research is necessary to examine the complex relationship among person, environment, and participation in occupations. There are also suggestions that it is important to not only use conceptual models from the occupational therapy as a way of reasoning about occupation, but also to integrate theory from other disciplines regarding to the occupational therapy practice. References: - Deane, K. H. O., Ellis-Hill, C., Dekker, K., Davies, P., & Clarke, C. E. (2003). A Delphi Survey of Best Practice Occupational Therapy for Parkinson’s disease in the United Kingdom. British Journal of Occupational Therapy. 66(6), 247-254. - Fisher, A. G. (2001). AMPS, Assessment of Motor and Process Skills, Volume 1: Development, Standardization, and Administration Manual, Colorado, USA: Three Start Press (fourth edition). - Law, M. (2002). Participation in the Occupations of Everyday Life. American Journal of Occupational Therapy. 56(6), 640-649. - Law, M., Cooper, B., Strong, S., Stewart, D., Rigby, P., & Letts, L. (1996). The personenvironment-occupation model: A trans-active approach to occupational performance. Canadian Journal of Occupational Therapy. 63, 9-23. - Law, M., Polatajko, H., Baptiste, S., & Townsend. E. (1997). Core concepts of occupational therapy. In E. Townsend (Ed.), Enabling occupation: An occupational therapy perspective (pp.29-56). Ottowa, ON: CAOT Publications ACE. - Jones, D., Blair, S., Hartery, T, & Jones, R. K. (1998). Sociology and occupational therapy: An integrated approach. Edinburgh, UK: Churchill Livingstone. - Martin, W. R.,& Wieler, M. (2003). Treatment of Parkinson’s disease. Canadian Journal of Neurological Science, 30 Supplement I, S27-33. - O’Brien, P., Dyck, I., Caron, S., & Mortenson, P. (2002). Environmental analysis: Insights from sociological and geographical perspectives. Canadian Journal of Occupational Therapy. 69(4), 229 – 238. - Stanton, S., Thompson-Franson, T., & Kramer, C. (1997). Linking Concepts to a process for Working With Clients. In Townsend, E (Ed.), Enabling Occupation: An Occupational Final Project – January 2005 Maria de Boer and Fieke Wermers

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Therapy Perspective (pp 56-94). Ottowa: Canadian Association of Occupational Therapists Publications.

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Stage 3: Identify Performance Components and Environmental Conditions The occupational therapist and client identify the occupational performance components and environmental conditions that are contributing to the occupational performance issue(s) (Stanton, Thompson-Franson, & Kramer, 1997).

§ 4.5 Clinical Question 2: Assessment of Motor and Process Skills (AMPS) Preface: The occupational therapists of the department Neurology in the University Medical Centre Ljubljana use the Assessment of Motor and Process Skills (AMPS) to measure the quality of the performance of Activities of Daily Living (ADL) of people with Parkinson’s disease. The occupational therapists want to know if there is evidence for the value of using the assessment AMPS to have information about the four continua (effort, efficiency, safety and independence) of the performance of ADL of a person with Parkinson’s disease. Person/problem People with Parkinson’s disease (who have problems in the performance of ADL)

Intervention Measuring the quality of performance of ADL of people with Parkinson’s disease by using the assessment AMPS

Co-intervention

Outcome To have information about the effort, efficiency, safety and independence of the performance of ADL of the person with Parkinson’s disease

Clinical Question: What is the evidence for the value of measuring the quality of performance of ADL of people with Parkinson’s disease by using the assessment AMPS as a means to have information about the effort, efficiency, safety and independence of the performance of the ADL? Evidence: There is no evidence found regarding the use of the assessment AMPS in the occupational therapy practice of people with Parkinson’s disease. Discussion: There are different kinds of resources found that say something about the value of using the AMPS to observe occupational performance of people with Parkinson’s disease. Here below you find the most interesting quote’s: The AMPS has been often used with people with Parkinson’s disease. But few studies have been published (personal communication with Anne Fisher, November 2004). Recommendation: The Assessment of Motor and Process Skills (AMPS) can be used during the observation of the occupational performance in the phase of diagnosis of clients with Parkinson’s disease (Best, Kok, Sinnema, & Winder, 2004). Final Project – January 2005 Maria de Boer and Fieke Wermers

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The AMPS (Fisher, 1999) attempt to measure occupational performance, from an occupational therapy perspective. The AMPS is considered “improved method of assessing occupational performance…and are reasonably objective and quantitative” (Mathiowetz, 1993, p.226) The AMPS is performance based, but is not valid to use with people with Parkinson’s disease, since it cannot be administered to the clients when they are off i.e. in a state of immobility and dependency, due to dopamine depletion (personal communication with Anne Fisher, June 1998). The AMPS can only be administered if the client is able to engage in activities and since there are times during the off state that the client cannot engage at all, the test is not useful. An evaluation tool must be valid to administer in both the on (i.e. in a state of relative independence and mobility due to dopamine replacement) and the off stages, experienced by those with fluctuating and later stage Parkinson’s disease (Gaudet, 2002). There are different kinds of resources found that say something about the value of using the AMPS to observe occupational performance in general. Here below you find the most interesting quote’s: The AMPS is an observation assessment for occupational therapists that can be used for people with neurological problems. The assessment observes the occupation of a person in the daily tasks of domestic and self-care. The assessment is standardized and client-centred (www.xs4all.nl). AMPS evaluates skills that directly impact on performance. It is an observational assessment whereby the individual chooses to perform 2-3 IADL tasks from a possible 60. (at the moment 83 tasks in total) Clients are rated on process and motor skills. Reliability has been demonstrated. AMPS has been proven valid as a cross-culture measure. About the clinical utility; assessors must take a 5 day training course to administer and score the AMPS. AMPS is a unique observational approach to assessment of function. It is the only observation assessment to adopt a semi-individualized approach (Donnelly & Carswell, 2002). The AMPS ADL motor and ADL process scales can be used reliably in clinical practice and for research purposes (Kirkley & Fisher, 1999). The results in the descriptive comparison in the work of Merritt and Fisher (Merritt & Fisher, 2003) suggest that the AMPS is also free of gender bias. The study of Card (2000) shows that the difficulties experiences using the Assessment of Motor and Process Skills (AMPS) in their clinical practice after following a AMPS training course include problems associated with low staffing levels, high workloads or lack of time to introduce new work skills. Success was dependent on a supportive working environment, especially from managers, and adequate time available to allow for the development of a new skill. Occupational therapy managers need to support therapists following training to make best use of the time and the cost involved in training individuals to use the AMPS. Conclusion: There are some indicators that the assessment AMPS can be used to observe the occupational performance in the occupational therapy practice with people with Parkinson’s disease. But there is no evidence available. The AMPS is not valid to use with people with Parkinson’s disease, since it cannot be administered to the clients when they are in off-stage. Final Project – January 2005 Maria de Boer and Fieke Wermers

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There are some study’s that give evidence about the use of AMPS in general. The AMPS is standardized, client-centred, reliable (in clinical practice and for research purposes), has been proven valid as a cross-culture measure and is suggested to be free of gender bias. Difficulties experienced by AMPS-skilled occupational therapists using the AMPS in clinical practice include problems associated with low staffing levels, high workloads or lack of time to introduce new work skills. Support from the working environment, especially from managers, is necessary. References: - Best, B., Kok, J., Sinnema, G., & Winder, E. (2004). De ergotherapeutische behandeling van clienten met de ziekte van Parkinson, Een eerste concept richtlijn. Amsterdam: Hogeschool van Amsterdam / Nijmegen: UMC St. Radboud. - Chard, G. (2000). An Investigation into the Use of the Assessment of Motor and Process Skills (AMPS) in Clinical Practice. British Journal of Occupational Therapy. 63(10), 481488. - Donnelly, C., & Carswell, A. (2002). Individualized outcome measures: A review of the literature. Canadian Journal of Occupational Therapy. 69(2), 84-94. - Gaudet, P. (2002). Measuring the impact of Parkinson’s disease: An occupational therapy perspective, Canadian Journal of Occupational Therapy, 69(2), 104-113. - Fisher, A. G. (2001). AMPS, Assessment of Motor and Process Skills, Volume 1: Development, Standardization, and Administration Manual, Colorado, USA: Three Start Press (fourth edition). - Kirkley, K. N., & Fisher, A. G. (1999). Alternate forms reliability of the assessment of motor and process skills. Journal of Outcome Measurements. 3(1), 53-70. (abstract) - Mathiowetz, V. (1993). Role of physical performance component evaluations in occupational therapy functional assessment. American Journal of Occupational Therapy. 47, 225-230. - Merritt, B. K., & Fisher, A. G. (2003). Gender differences in the performance of activities of daily living. Archives of Physical Medicine and Rehabilitation. 84(12), 1872-1877. (abstract) - Stanton, S., Thompson-Franson, T., & Kramer, C. (1997). Linking Concepts to a process for Working With Clients. In Townsend, E (Ed.), Enabling Occupation: An Occupational - Therapy Perspective (pp 56-94). Ottowa: Canadian Association of Occupational - Therapists Publications. - www.xs4all.nl/~mvijn/amps/AMPSinserviceNL.ppt

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§ 4.6 Clinical Question 3: Parkinson’s disease Activity of Daily Living Scale (PADLS) Preface: The occupational therapists of the department neurology in the University Medical Centre Ljubljana want to know if there is evidence to use the assessment Parkinson’s disease Activities of Daily Living Scale (PADLS). The impact of disease on activities of daily living (ADL) as reported by patients themselves is an important measure of the disadvantage attributable to any disease stages (WHO, 1980). Also to consider in Parkinson’s disease is that through surgery and drug therapy the motor impairment may decrease, but not necessarily improve the ADL or the Health Related Quality of Life (HRQoL) (Hobson, Edwards, & Meara, 2001). This indicates the importance of having adequate information about the satisfaction of ADL of the person with Parkinson’s disease. Person/problem People with Parkinson’s disease

Intervention Using the Parkinson’s disease Activities of Daily Living Scale (PADLS)

Co-intervention -

Outcome To have an adequate view on satisfaction of the ADL of a person with Parkinson’s disease

Clinical Question: What is the evidence of the value of using the Parkinson’s disease Activities of Daily Living Scale (PADLS) as a means to get an adequate view on the satisfaction of the ADL of a person with Parkinson’s disease? Evidence: The PADLS was found to be a reliable and valid measure of ADL, demonstrating acceptable internal consistency and strong associations with existing measures of disease severity, depression, cognitive screening and health-related quality of life. The PADLS allows patients to subjectively report the impact that Parkinson’s disease has upon daily activities and will complement existing formal clinical measures in Parkinson’s disease (Hobson, et al., 2000). Discussion: Recommendation: There are indications that the assessment Parkinson’s Disease Activities of Daily Living Scale (PADLS) can be used during the occupational therapy practice of clients with Parkinson's disease (Best, Kok, Sinnema, & Winder, 2004). The PADLS is a disease-specific measure in Parkinson’s disease, which provides health professionals with a reliable index of self-rated ADL. The PADLS is acceptable to patients and takes very little time to effort or complete. However, the sensitivity to change over time of the PADLS remains to be established. The PADLS provides a single global rating and does not allow the individual to rate the severity of specific problems. Undoubtedly, purely subjective assessments are not suitable for use in isolation and they must complement existing measures, which could health care professionals with more comprehensive information on how the patient actually perceives their illness. More evaluations are needed (Hobson, et al., 2001). Final Project – January 2005 Maria de Boer and Fieke Wermers

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The PADLS allows the patients to give their subjective view on the impact of Parkinson’s disease in terms how it effects their ADL, as opposed to relying solely on the clinician’s assessment of disease severity and progression (Hobson et al., 2001). Self-report measures of functional status can also be used to monitor and in the evaluation of novel therapies (Hobson, et al., 2001). Conclusion: The PADLS is found to be a reliable and valid measure of ADL that allows people with Parkinson’s disease to subjectively report the impact of Parkinson’s disease. Furthermore, there are indications that it is important to have information about the satisfaction of the ADL of the person with Parkinson’s disease. References: - Hobson, J. P., Edwards, N. I., & Meara, R. J. (2001). The Parkinson’s disease Activities of Daily Living Scale: a simple and brief subjective measure of disability in Parkinson’s disease. Clinical Rehabilitation. 15(3), 241-246. - World Health Organization (1980). International Classification of Impairments, Disabilities and Handicaps. Geneva: World Health Organization.

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§ 4.7 Clinical Question 4: Self-assessment Parkinson Disability Scale (SPDDS) Preface: The occupational therapists of the department neurology in the University Medical Center Ljubljana want to know if there is evidence to use the Self-assessment Parkinson Disability Scale with people with Parkinson’s disease. The occupational therapists do not use the Self-assessment Parkinson Disability Scale in their practice. The impact of disease on activities of daily living (ADL) as reported by patients themselves is an important measure of the disadvantage attributable to any disease state (WHO, 1980). Also to consider in Parkinson’s disease is that through surgery and drug therapy the motor impairment may decrease, but not necessarily improve the ADL or the Health Related Quality of Life (HRQoL) (Hobson, Edwards, & Meara, 2001). This indicates the importance of having adequate information about the satisfaction of ADL of the person with Parkinson’s disease. Person/problem People with Parkinson’s disease (who live at home)

Intervention Co-intervention Using the Selfassessment Parkinson Disability Scale (SPPDS)

Outcome To have an adequate view on the disability in daily living in the home environment of a person with Parkinson’s disease

Clinical Question: What is the evidence of the value of using the Self-assessment Parkinson Disability Scale (SPPDS) as a means to get an adequate view on the disability in daily living in the home environment of a person with Parkinson’s disease? Evidence: The SPDDS is an unidimensional scale that measures disability in activities of daily living in Parkinson patients living at home. The SPDDS covers a wide range of activities. These activities form a hierarchy with regard to the degree of difficulty encountered by patients in performing these activities (Biemans, Dekker, & van der Woude, 2001). Discussion: Regarding the cross-sectional research (Biemans, et al., 2001) it can be concluded that the SPDDS can be used to measure the disabilities in the ADL of people with Parkinson’s disease living at home. The SPDDS is not an assessment of occupational therapy, but it has been specific developed for Parkinson’s disease. After reading the fact that the assessment is not an assessment of occupational therapy, the questions arises if the SPDDS can be used in the occupational therapy practice. Recommendation: There are indications that the Self-assessment Parkinson’s Disease Disability Scale (SPDDS) can be used during the occupational therapy practice with people with Parkinson’s disease (Best, Kok, Sinnema, & Winder, 2004).

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Conclusion: The Self-assessment Parkinson’s Disease Disability Scale (SPDDS) measures disability in activities of daily living in Parkinson’s disease with people living at home. There are indications that the assessment can be used in the occupational therapy practice. References: - Best, B., Kok, J., Sinnema, G., & Winder, E. (2004). De ergotherapeutische behandeling van cliënten met de ziekte van Parkinson, Een eerste concept richtlijn. Amsterdam: Hogeschool van Amsterdam / Nijmegen: UMC St. Radboud. - Biemans M. A., Dekker J., & van der Woude L. H. (2001). The internal consistency and validity of the Self-Assessment Parkinson's Disease Disability Scale. Clinical Rehabilitation.15(2), 221-228. - Hobson, J. P., Edwards, N. I., & Meara, R. J. (2001). The Parkinson’s disease Activities of Daily Living Scale: a simple and brief subjective measure of disability in Parkinson’s disease. Clinical Rehabilitation. 15(3), 241-246. - World Health Organization (1980). International Classification of Impairments, Disabilities and Handicaps. Geneva: World Health Organization.

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§ 4.8 Clinical Question 5: Assessing cognition Preface: The occupational therapists of the department Neurology in the University Medical Centre Ljubljana use the assessments LOTCA (Loewenstein Occupational Therapy Cognitive Assessment) and the Rivermead Behavioural Memory Test to investigate the current situation of the person with Parkinson’s disease regarding to the cognition. The SCOPA-COG is a quit new assessment to investigate the situation of a person with Parkinson’s disease regarding to the cognition. The occupational therapists do not use the SCOPA-COG assessment in their practice. But first of all, what do we mean by the term ‘cognition’? There are different definitions of cognition. Katz (1992) incorporates the following range of processes within cognition, we use in this context: Attention, orientation, perception, praxis, visuo-motor organization, memory, thinking, operations, executive functions, problem solving, planning, reasoning, and judgement. When there are cognitive functions that are affected in Parkinson’s disease, these functions are likely to be attention, active memory, executive functions, and visuopatial functions. Verbal functions and thinking and reasoning are relatively spared (Marinus, et al., 2003). Person/problem People with Parkinson’s disease (who have problems with their cognition)

Intervention Using the assessments LOTCA (Loewenstein Occupational Therapy Cognitive Assessment) and Rivermead Behavioural Memory Test

Co-intervention Using the SCOPACOG

Outcome To investigate the current situation of a person with Parkinson’s disease regarding the cognition

Clinical Question: What is the evidence for the value of using the assessments LOTCA (Loewenstein Occupational Therapy Cognitive Assessment) and Rivermead Behavioural Memory Test in comparison with using the SCOPA-COG as a means of investigate the current situation of a person with Parkinson’s disease with regard to the cognition? Evidence: LOTCA / Rivermead Behavioural Memory Test: There is no evidence found regarding to the use of the assessments LOTCA (Loewenstein Occupational Therapy Cognitive Assessment) and Rivermead Behavioural Memory Test as a means of investigate the current situation of a person with Parkinson’s disease regarding the cognition.

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SCOPA-COG: The SCOPA-COG is a short, reliable, and valid instrument that is sensitive to the specific cognitive deficits in Parkinson’s disease (Marinus, et al., 2003). Discussion: Patients with Parkinson’s disease generally do not perform as well on cognition tests as age-, education-, and sex-matched control subjects (Marinus, et al., 2003). Patients with Parkinson’s disease often have “subcortical dementia”: normal or slightly decreased performance in language, gnosis, and praxis functions, with memory and executive functions and more prominently affected. The current definition of dementia may be biased toward the cortical the cortical-type phenomenology, which could underestimate the cognitive deficit in Parkinson’s disease if the classic instruments for dementia are used. There are indications that the so-called “cortical” functions are also affected in Parkinson’s disease, albeit to a lesser extent. Some of the cortical functions such as orientation, attention, and perception become affected later in the course of the disease (Marinus, et al., 2003). The prevalence ratio for dementia in people with Parkinson’s disease over the age of sixty, based on the DSM-IV criteria, was 44% (Hobson & Meara, 1999). This indicates the importance of assessing the cognitive impairment of people with Parkinson’s disease. There is also a need for further research regarding to the cognitive impairment and / or dementia within Parkinson’s disease. This is concluded after among other things the finding in the study of Hobson and Meara: “Compared with similarly aged controls, patients with clinically probable Parkinson’s disease have a fivefold-increased risk of developing dementia. This finding has significant implications for successful clinical management of this condition” (Hobson & Meara, 2004). Next to the findings in the following study: “The findings from the study appear consistent with recent studies that have revealed evidence of disruption of executive function over time in patients with Parkinson’s disease who exhibit otherwise intact cognitive abilities” (Azuma, et al., 2003). But our view on the question if this is the assessing of the cognition a task of an occupational therapists, will be given attention to in the end of this discussion. About the assessments: LOTCA (Loewenstein Occupational Therapy Cognitive Assessment): There are different kinds of resources found that say something about the value of using the LOTCA. Here below you find the most interesting quote’s: The results of the study, that aimed to determine the reliability and validity of the LOTCA battery for brain-injured patients, supported the validity of the LOTCA. Furthermore, factor analysis provided initial construct validation for three areas of the battery: perception, visuomotor organization, and thinking operations (Katz, Itzkovich, Averbuch, & Elazar, 1989). The findings of the study about comparison of the performance of younger and older adults on three versions of a puzzle reproduction task, support the use of the simplified version of Final Project – January 2005 Maria de Boer and Fieke Wermers

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the LOTCA Puzzle Reproduction task with older adults or with persons with major cognitiveperceptual difficulties. Further studies of the level of difficulty of the subplacement version are needed to examine whether this version is more sensitive to constructional deficits in a sample of person with neurological impairments because even mild constructional deficits have been shown to relate to disabilities in daily functioning (Katz, Champagne, & Cermak, 1997). Rivermead Behavioural Memory Test (RBMT): There are also different kinds of resources found that say something about the value of using the Rivermead Behavioural and Memory Test. Here below you find the most interesting quote’s: Validity, parallel form and interrater reliability all proved to be high, regarding to the use of the Rivermead Behavioural Memory Test. It is concluded that the RBMT is a short, reliable, and valid test of everyday memory problems (Wilson, Cockburn, Baddeley, & Hiorns, 1989). Results of the study about standardized memory tests and the appraisal of everyday memory suggest that RBMT is most accurate in classifying severity of memory impairment as rated by clinicians, next to the use of the Luria Nebraska Neuropsychological Battery Memory Scale (LNNB-M) and the Wechsler Memory Scale-Revised (WMS-R) (Makatura, Lam, Leahy, Castillo, & Kalpakjian, 1999). SCOPA-COG (SCales for Outcomes in PArkinson’s disease- COGnition): The SCOPA-COG (SCales for Outcomes in PArkinson’s disease- COGnition) is a short, practical instrument that is sensitive to the specific cognitive deficits in Parkinson’s disease. The SCOPA-COG is not constructed as a screening tool or a diagnostic instrument. Instead, the instrument is intended for comparing groups in research situations. Replication of the results in a different sample is needed to add further support to this scale (Marinus, et al., 2003). Next to the already named assessments to investigate he current situation of a person with Parkinson’s disease regarding the cognition, there are also two other assessments mentioned in literature that are being used in the occupational therapy practice we want to mention here: - The Mini Mental State Examination (MMSE) - The Middlesex Elderly Assessment of Mental State (MEANS) Mini Mental State Examination (MMSE): With the MMSE it is possible to further investigate the cognition (Deane, Ellis-Hill, Dekker, Davies, & Clarke, 2003). Recommendation: There are indications that the use of other assessments have preference above the use of the assessment Mini Mental State Examination during the occupational therapy practice (Best, Kok, Sinnema, & Winder, 2004). De MMSE is not a occupational therapy assessment and is not specific aimed for people with Parkinson’s disease. People with Parkinson’s disease can experience cognitive impairments in a more later stage of the disease. Results of the Mini Mental State Examination can be used in the occupational therapy practice of people with Parkinson’s disease (Best, et al., 2004).

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Middlesex Elderly Assessment of Mental State (MEANS): With the Middlesex Elderly Assessment of Mental State it is possible to further investigate the cognition (Deane, et. al., 2003). Recommendation: There are indications that the use of other assessments have preference above the use of the assessment Middlesex Elderly Assessments of Mental State during the occupational therapy practice (Best, et al., 2004). The Middlesex Elderly Assessments of Mental State is not a occupational therapy assessment and is not specific aimed for Parkinson’s disease. People with Parkinson’s disease can experience cognitive impairments in a more later stage of the disease. Results of the Middlesex Elderly Assessments of Mental State can be used in the occupational therapy practice of people with Parkinson’s disease (Best, et al., 2004). And also the CAMCOG (the Cambridge Cognitive Examination, as the cognitive section of the Cambridge Examination for Mental Disorders) is mentioned often, when the subject is about assessing the cognitive impairment. Also in relation with Parkinson’s disease. CAMCOG (the Cambridge Cognitive Examination): The CAMCOG appears to be a useful screening instrument for dementia and cognitive impairment in Parkinson’s disease, it may prove helpful in detecting those with Parkinson’s disease who may be at risk of developing dementia and in longitudinal studies of cognitive function in Parkinson’s disease (Hobson & Meara, 1999). The CAMCOG is not a occupational therapy assessment and is not specific aimed for Parkinson’s disease. The result of the study show that the CAMCOG is a more sensitive and specific measure of cognitive impairment in Parkinson’s disease than the Mini-Mental State Examination. Employing the CAMCOG may assist in the detection of those who are at risk of becoming demented. And that the prevalence of dementia and cognitive problems in elderly patients with Parkinson’s disease may be underestimated (Hobson & Meara, 1999). There is one question that arises when reading this information. What does an occupational therapist wants to assess about the cognition of a person with Parkinson’s disease? In our opinion, the occupational therapist wants to assess the cognitive problems in occupational performance in daily living. We think, the assessment of the cognition as a function lies more in the field of other disciplines. That does not mean that the occupational therapist does not wants to have the information to use in practice, concerning the cognition as a function. But an occupational therapist focuses on the activity and participation of the person, regarding to the targeted outcomes in the occupational therapy practice. The SCOPA-COG is an Parkinson’s disease specific assessment that assess cognition. The LOTCA (Loewenstein Occupational Therapy Cognitive Assessment) and the Rivermead Behavioural and Memory Test are occupation specific assessments that assesses the impact of cognitive problems in occupational performance. Conclusion: The SCOPA-COG is a reliable, and valid instrument that is sensitive to the specific cognitive deficits in Parkinson’s disease. There is no evidence for the value of using the LOTCA and Rivermead Behavioural and Memory Test in the occupational therapy practice of Parkinson’s Final Project – January 2005 Maria de Boer and Fieke Wermers

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disease. But at present we will give the preference of the use of LOTCA and Rivermead Behavioural and Memory Test above the use of SCOPA-COG in the occupational therapy practice with people with Parkinson’s disease, because of the focus on occupation of the LOTCA and Rivermead Behavioural and Memory Test. Research about the use of LOTCA and Rivermead Behavioural and Memory Test in the occupational therapy with people with Parkinson’s disease is necessary. References: - Azuma, T., Cruz, R. F., Bayles, K. A., Tomoeda, C. K., & Montgomery Jr., E. B. (2003). A longitudinal study of neuropsychological change in individuals with Parkinson’s disease. International Journal of Geriatrics and Psychiatry. 18(11), 1115-1120. - Best, B., Kok, J., Sinnema, G., & Winder, E. (2004). De ergotherapeutische behandeling van clienten met de ziekte van Parkinson, Een eerste concept richtlijn. Amsterdam: Hogeschool van Amsterdam / Nijmegen: UMC St. Radboud. - Deane, K. H. O., Ellis-Hill, C., Dekker, K., Davies, P., Clarke, C. E. (2003). A survey of current occupational therapy practice for Parkinson’s disease in the United Kingdom. British Journal of Occupational Therapy. 66(5), 193-200. - Hobson, P., & Meara, J. (1999). The detection of dementia and cognitive impairment in a community population of elderly people with Parkinson’s disease by use of the CAMCOG neuropsychological test. Age and Aging. 28(1), 39-43. - Hobson, P., & Meara, J. (2004). Risk and incidence of dementia in a cohort of older subjects with Parkinson's disease in the United Kingdom. Movement Disorders. 19(9), 1043-1049. (abstract) - Itzkovich, M., Elazar, B., & Averbuch, S. (2000) LOTCA, Loewenstein Occupational Therapy Cognitive Assessment Second Edition, Manual. Pequannock NJ: Maddak Inc. - Katz, N. (1992). Introduction: comparison of cognitive approaches in occupational therapy. In Katz, N. (Ed.): Cognitive Rehabilitation: Models for Intervention in Occupational Therapy. Boston: Andover Medical. - Katz, N., Champagne, D., & Cermak, S. (1997). Comparison of the performance of younger and older adults on three versions of a puzzle reproduction task. American Journal of Occupational Therapy. 51(7), 562-568. (abstract) - Katz, N., Itzkovich, M., Averbuch, S., & Elazar, B. (1989). Loewenstein Occupational Therapy Cognitive Assessment (LOTCA) battery for brain-injured patients: reliability and validity. American Journal of Occupational Therapy. 43(3), 184-192. (abstract) - Makatura, T. J., Lam, C. S., Leahy, B. J., Castillo, M. T., & Kalpakjian, C. Z. (1999). Standardized memory tests and the appraisal of everyday memory. Brain Injury. 13(5), 355-367. (abstract) - Marinus, J., Visser M., Verwey, N. A., Verhey, F. R. J., Middelkoop, H. A. M., Stiggelhout, A. M., & van Hilten, J. J. (2003). Assessment of cognition in Parkinson’s disease. Neurology. 61(9), 1222-1228. - Wilson, B., Cockburn, J., Baddeley, A., & Hiorns, R. (1989). The development and validation of a test battery for detecting and monitoring everyday memory problems. Journal of Clinical Exp. Neuropsychology. 11(6), 855-870. (abstract)

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§ 4.9 Clinical Question 6: Jebsen Hand Function Test Preface: The occupational therapists of the department Neurology in the University Medical Centre Ljubljana use the Jebsen Hand Function Test (Jones, 1986) as a way to assess the hand function in activities of daily living of a person with Parkinson’s disease. The occupational therapists want to know if there is evidence for using the Jebsen Hand Function Test in the occupational therapy practice with people with Parkinson’s disease. As an occupational therapist it is important to evaluate overall functional performance. Also when they are dealing with people with Parkinson’s disease. Occupational therapists first must perform a task analysis to determine the performance components inherent in each functional task. Central to each activity of daily living lays hand function and fine motor coordination. When there is a problem in this area, assessment of motor function deficits is important. This assessing is not only important for diagnostic and prognostic reasons, but also for evaluating the effectiveness of the occupational therapy treatment. Person/problem People with Parkinson’s disease

Intervention Using the Jebsen Hand Function Test

Co-intervention -

Outcome To asses the hand function in activities of daily living

Clinical Question: What is the evidence for the value of using the Jebsen Hand Function Test as a means of assess the hand function in activities of daily living of a person with Parkinson’s disease? Evidence: There is no evidence found concerning this particular question. Discussion: Although there is no evidence found concerning the particular clinical question, we want to mention information that, in our opinion, can be related to the question. There is some evidence about the use of Jebsen Hand Function Test with individuals with acquired neurological disorders of moderate to mild impaired function of the upper extremity: The modified Jebsen Test has proven to be simple, practical to use, valid and reliable. This measure can easily be used in clinical practice, is recommended as a measure for gross functional dexterity and should be considered for inclusion in the ‘basket of recommended instruments’ (Bovend’Eerdt, et al., 2001). When using arm measures it is of clinical importance to compare the affected with the unaffected hand (Bovend’Eerdt, Dawes, Johansen-Berg, & Wade, 2001). There is some evidence about the use of Jebsen Hand Function Test with a geriatric population: The Jebsen Hand Function Test does not evaluate bilateral hand coordination, is bulky to transport, and assesses speed with out to quality of performance. Despite its disadvantages it Final Project – January 2005 Maria de Boer and Fieke Wermers

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does hold numerous advantages. Easily available and quickly administered, the Jebsen Hand Function Test consist of readily available equipment at little cost. In addition, this test has proven valuable in evaluating those with a variety of conditions, including fragile patients who are older and cognitively impaired, quantifying age-related changes in hand function. Evaluating nondominant an dominant hands separately with both in-hand manipulation and the use of tools, the Jebsen Hand Function Test consists of subtests relevant to ADL performance with associated, well-described literature and standardized normative data (Hardin, 2002). There is some evidence about the Jebsen Hand Function Test and the content validity in general: An occupational therapist might question whether items in that test (e.g., writing with nondominant hand or stacking checkers) are representative of everyday tasks and whether the subtests included in the test actually represent the tasks of interest. For example, does turning over 3-in. by 5-in. index cards actually stimulate page turning, and does picking up kidney beans with a spoon placing them into a can in front of a person actually simulate eating? (Mathiowetz, Volland, Kashman, & Weber,1985) In conclusion, the Jebsen Hand Function Test is a reliable and valid test of hand function. The test is sensitive to deficit and is able to monitor change in patients' condition over time. The test does not, however, use hand movements/grips used in ADL, other than by chance. Nor does the test correlate with ADL function. The test, therefore, cannot be seen to act as a predictor of ADL performance. The power of this test is in its ability to detect neurological deficit and change in the severity of this deficit. With further studies into the extent to which the test is capable of detecting deficit and monitoring change, the Jebsen Hand Function Test will become an even more valuable measure of hand function in neurological conditions (Jones, 1986). Conclusion: There is no evidence found for the value of using the Jebsen Hand Function Test as a means of assess the hand function in activities of daily living of a person with Parkinson Disease. Nevertheless this test has proven valuable in evaluating those with a variety of conditions, including fragile patients who are older and cognitively impaired, quantifying age-related changes in hand function. An occupational therapist might question whether items in that test are representative of everyday tasks and whether the subtests included in the test actually represent the tasks of interest. In general we can conclude that when using arm measures it is of clinical importance to compare the affected with the unaffected hand. References: - Bovend’ Eerdt, T. J. H., Dawes, H., Johansen-Berg, H., & Wade, D. T. (2004). Evaluation of the Modified Jebsen Test of Hand Function and the University of Maryland Arm Questionnaire for Stroke. Clinical Rehabilitation, 18, 195-202. - Hardin, M. (2002). Assessment of hand function and fine motor coordination in the geriatric population. Topics in Geriatric Rehabilitation, 18, 18-27. - Mathiowetz, V., Volland, G., Kashman, N., & Weber, K. (1985). Adult norms for the Box and Block Test of manual dexterity. American Journal of Occupational Therapy, 39, 386391. Final Project – January 2005 Maria de Boer and Fieke Wermers

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§ 4.10 Clinical Question 7: Modified Fatigue Impact Scale (MFIS) Preface: The occupational therapists of the department Neurology in the University Medical Centre Ljubljana use the Modified Fatigue Impact Scale (MFIS) (Ritvo, et al., 1997) as way to inventory fatigue of people with Parkinson’s disease. The occupational therapists want to know if there is evidence for using the MFIS in the occupational therapy practice with people with Parkinson’s disease. People with Parkinson’s disease have increased physical fatigue and mental fatigue compared to others. Physical fatigue and mental fatigue are independent symptoms in Parkinson’s disease that need to be assessed and treated by occupational therapists separately (Lou, Kearns, Oken, Sexton, & Nutt 2001). It is very important to recognize fatigue in Parkinson’s disease and to develop strategies to relieve this complaint of the people with Parkinson’s disease (Herlofsen & Larsen, 2002). Person/problem People with Parkinson’s disease

Intervention Using the Modified Fatigue Impact Scale (MFIS)

Co-intervention -

Outcome To assess fatigue

Clinical Question: What is the evidence for the value of using the Modified Fatigue Impact Scale (MFIS) as a means to assess fatigue of people with Parkinson’s disease? Evidence: There is no evidence found concerning this particular question. Discussion: Although there is no evidence found concerning the particular clinical question, we want to mention information that, in our opinion, can be related to the question. There is some evidence found about the use of the Modified Fatigue Impact Scale (MFIS) with patients with another chronic disease, multiple sclerosis (MS). No cultural or linguistic differences were found in the psychometric properties of the Belgian, Italian, Slovenian or Spanish version of the Modified Fatigue Impact Scale. We recommend this scale for research purposes and in clinical practice. Due to the limited value of the psychosocial subscale, we recommend interpreting this subscale with caution (Kos, et al., 2005 in print). There is some evidence found about the use of the full version of the MFIS the Fatigue Impact Scale (FIS) (Fisk, et al., 1994) with patients with multiple sclerosis (MS) and chronic fatigue syndrome (CFS): Fisk et al. developed the Fatigue Impact Scale (FIS) in a similar way, starting with interviews of 30 multiple sclerosis (MS) patients to suggest questionnaire items, followed by a validation study in 105 patients with MS, 145 patients with chronic fatigue syndrome (CFS), and 34 hypertensive controls (7,8). The FIS was designed "to assess the problems in patients' quality Final Project – January 2005 Maria de Boer and Fieke Wermers

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of life that they attribute to their symptoms of fatigue." It has separate subscales in which patients rate the impact of fatigue on physical (10 items), cognitive (10 items), and psychosocial functions (20 items). Fatigue was never defined, however, so it is unclear whether patients might have also considered motor dysfunction, cognitive dysfunction, depressed mood, and so forth, when making these determinations. FIS subscales had good internal consistency, and each subscale was higher (worse) in MS and CFS patients than in hypertensive controls. There was no association between FIS and Expanded Disability Status Scale (EDSS) scores. The authors stated that this observation showed the FIS was measuring fatigue rather than neurologic impairment/disability. Because the EDSS has limitations as a measure of disability, however, such a conclusion may not be warranted (Schwid, Covington, Segal, & Goodman, 2002). There is some information found about the difficulties of measuring fatigue of patients with multiple sclerosis (MS): Theoretically, fatigue may be related to neuro-modulation by soluble products of the autoimmune process or by disruption of central nervous system pathways necessary for sustained activity, but little empirical evidence supports these possibilities. Amantadine, pemoline, and modafanil improved fatigue in placebo-controlled clinical trials, but these studies all had significant limitations. Difficulty measuring fatigue has impeded studies of its characteristics, mechanisms, and therapeutics. Most studies have relied on self-report questionnaires. These may be inappropriate, however, because they can be easily confounded by other symptoms of MS, they are entirely subjective, and they require patients to make difficult retrospective assessments. Studies of fatigue would be improved by including measures of more rigorously defined, quantifiable components of fatigue. Dividing fatigue into these components can provide objective assessments that are less likely to be confounded by other symptoms of MS, such as weakness, spasticity, cognitive impairment, and depressed mood (Schwid, et al., 2002). Conclusion: There is no evidence found for the value of using the MFIS as a means to assess fatigue of people with Parkinson’s disease. Nevertheless there is some information about the MFIS with patients with multiple sclerosis. A study showed that there were found no cultural or linguistic differences in the good psychometric properties of the Belgian, Italian, Slovenian or Spanish version of the MFIS. However the results showed a limited value of the psychosocial subscale. Therefore we recommend interpreting the psychosocial subscale scores with caution. In general we can say that measuring fatigue would be improved by including measures of more rigorously defined, quantifiable components of fatigue. References: - Fisk, J. D., Ritvo, P. G., Ross, L., Haase, D. A., Marrie, T. J., & Schlech, W. F. (1994) Measuring the functional impact of fatigue: initial validation of the fatigue impact scale. Clin Inf Dis, 18, 79-83. - Herlofson, K., & Larsen, JP. (2003). The influence of fatigue on health-related quality of life in patients with Parkinson's disease. Acta Neurol Scand, 107, 1-6.

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Lou, J. S., Kearns, G., Oken, B., Sexton, G., & Nutt, J. (2001). Exacerbated physical fatigue and mental fatigue in Parkinson's disease. Movement Disorders, 16, 190-196. Kos, D., Kerckhofs, E., Carrea, I., Verza, R., Ramos, M., & Jansa, J. (2005). Evaluation of the Modified Fatigue Impact Scale in four different European countries. In print. Schwid, S. R., Covington, M., Segal, B. M., & Goodman, A. D. (2002). Fatigue in multiple sclerosis: Current understanding and future directions Steven. Journal of Rehabilitation Research and Development, 39, 211-224.

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§ 4.11 Clinical Question 8: Parkinson’s Disease Questionnaire-39 (PDQ-39) Preface: The occupational therapists of the department Neurology in the University Medical Center Ljubljana use the generic EuroQoL (EQ-5D) (EuroQoL Group, 1990) to assess the quality of life of people with Parkinson’s disease. In literature is mentioned very often the diseasespecific Parkinson’s Disease Questionnaire-39 (PDQ-39) (Peto, et al., 1995) to measure the quality of life. The occupational therapists want to know if there is evidence for using the PDQ-39 in the occupational therapy practice concerning people with Parkinson’s disease. Parkinson's disease affects individuals quality of life. As an occupational therapist it is important to identify the factors that determine quality of life in people with Parkinson’s disease. Quality of life is increasingly recognized as a critical measure in health care as it incorporates the patients’ own perspective of their health. Person/problem People with Parkinson’s disease

Intervention Using the PDQ-39

Co-intervention

Outcome To assess quality of life

Clinical Question: What is the evidence for the value of using the PDQ-39 as a means to assess quality of live of a person with Parkinson’s disease? Evidence: There is some evidence found concern this particular question: In order to highlight particular areas of concern for people with Parkinson’s disease, it may be very helpful to include the disease-specific quality of life scale, Parkinson’s Disease Questionnaire-39 (Jenkinson, Fitzpatrick, Peto, Greenhall, & Hyman, 1997), routinely for baseline and follow-up assessments. An overwhelming majority of the respondents (96%) agreed with this view (Deane, Ellis-Hill, Dekker, Davies, & Clarke, 2003). There are indications that the assessment Parkinson's Disease Questionnaire 39 (PDQ-39) need to be further developed and also to be better determined of the validity before it can be used during the occupational therapy treatment with people with Parkinson’s disease. PDQ-39 measures the quality of life in 39 items/topics. The assessment is not an occupational therapy assessment but it is aimed specifically on people with Parkinson’s disease. From a cross-sectional design (Hagell, Whalley, McKenna,& Lindvall, 2003) comes up that the assessment can be used international very well. Many items/topics can be used well at the initial interview and evaluation of the occupational therapy treatment. The PDQ-39 has needs to further development and a better determination of validity before it is entirely suitable for use with people with Parkinson’s disease (Best, Kok, Sinnema, & Winder, 2004). Although the PDQ-39 bear promise as disease-specific and generic health status questionnaires in Parkinson’s disease, our preliminary observations indicates that further developmental work and evaluations are needed (Hagell, et al., 2003).

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Discussion: There is also found some evidence about the PDQ-39 in general: Instruments are needed that complement existing forms of clinical scales by providing assessments of the impact of PD from the point of view of the patient. Generic quality of life instruments do not address the specific issues associated with PD, such as the disturbance of concentration, difficulties with communication, unusual bodily symptoms, feeling of social embarrassment and related social costs. The PDQ-39 is a well-validated, disease-specific, quality of life questionnaire for PD. Is has been shown to be highly reliable in terms of internal consistency and test-retest results (Peto, Jenkinson, & Fitzpatrick, 1998). Data from the PDQ-39 can be presented either in profile form or as a single index figure. The profile should be of value in studies aimed at determining the impact of treatment regimes upon particular aspects of functioning and well-being in patients with Parkinson’s disease, while the Parkinson’s disease summary index (PDSI) ( will provide a summary score of the impact of the illness on functioning and well-being and will be of use in the evaluation of the overall effect of different treatments. Furthermore, the PDSI reduces the number of statistical comparisons and hence the role of chance when exploring data from the PDQ-39 (Jenkinson, et al., 1997). The PDQ-39 and its derivative measures have been translated in many languages and is rapidly becoming the quality of life questionnaire of choice for Parkinson’s disease research (Peto, et al., 1998). The selection of an instrument will partly be based on the goal of the study. For certain interventions, some domains of health related quality of life are more important to assess than others, and may thus influence the selection of the instrument. In many situations, however, the PDQ-39 will probably be the most appropriate health related quality of life instrument, because this scale has been tested most thoroughly, has adequate clinimetric characteristics, has been used in the largest number of studies, and is available in many languages. However, responsiveness of this scale still needs to be assessed more thoroughly, especially with respect to situations in which patients are expected to improve (for example, intervention studies). The PDQ-39 lacks items on self image, night time sleep problems, sexual activity, and transfers. Reliability of the social support subscale (test-retest and internal consistency) is inadequate (Marinus, et al., 2002). The occupational therapists of the department Neurology in the University Medical Centre Ljubljana use the generic EuroQoL (EQ-5D) (EuroQoL Group, 1990) to assess the quality of life of people with Parkinson’s disease. Evidence about the EQ-5D in comparison to the PDQ-39: A study of Schrag, Selai, Jahanshahi, & Quinn (2000 ) had shown the EQ-5D to be feasible and valid in a community dwelling population of patients with Parkinson's disease. The findings of this study suggest that the EQ-5D summary score differs between patients grouped by certain clinical features, and correlates well with clinical scales, similar to the disease specific PDQ-39 summary score. However, the significance of individual comparisons will have to be confirmed on new sets of patients, and its sensitivity to change needs to be assessed in further studies.

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Evidence about the quality of life of people with Parkinson’s disease: A study of Schrag, Jahanshahi & Quinn (2000) conclude that QoL in idiopathic Parkinson's disease is primarily determined by depression, disability, disease severity (particularly related to axial features), and cognitive impairment. Patients with the akinetic rigid subtype have worse QoL scores than those with tremor dominant disease. The motor part of the UPDRS, although the primary outcome measure for clinical trials with antiparkinsonian medication, did not contribute significantly to QoL in Parkinson's disease, and additional emphasis on other disease features should therefore gain greater importance in the treatment of the disease. Conclusion: There is evidence found for the value of using the PDQ-39 as a means to assess quality of live of a person with Parkinson’s disease. In order to highlight particular areas of concern for people with Parkinson’s disease, it may be very helpful to include the disease-specific quality of life scale, PDQ-39 routinely for baseline and follow-up assessments. From a cross-sectional design comes up that the assessment can be used international very well. Many items/topics can be used well at the initial interview and evaluation of the occupational therapy treatment. However there are also indications that the assessment PDQ-39 needs to be further developed and also to be better determined of the validity before it can be used during the occupational therapy treatment with people with Parkinson’s disease. References: - Best, B., Kok, J., Sinnema, G., & Winder, E. (2004). De ergotherapeutische behandeling van cliënten met de ziekte van Parkinson, een eerste concept richtlijn. Amsterdam: Hogeschool van Amsterdam/ Nijmegen: UMC St. Radboud. - Deane, K. H. O., Ellis-Hill, C., Dekker, K., Davies, P., & Clarke, C. E. (2003). A Delphi Survey of Best Practice Occupational Therapy Practice for Parkinson's Disease in the United Kingdom. British Journal of Occupational Therapy, 66, 247-254. - Hagell, P., Whalley, D., McKenna, S. P., & Lindvall, O., (2003). Health status measurement in Parkinson's disease: Validity of the PDQ-39 and Nottingham Health Profile. Movement Disorders, 18, 773-783. - Jenkinson, C., Fitzpatrick, R., Peto, V., Greenhall, R., & Hyman, N. (1997). The Parkinson's Disease Questionnaire (PDQ-39): development and validation of a Parkinson's disease summary index score. Age Ageing, 26, 353-357. - Marinus, J., Ramaker, C., van Hilten, J. J., & Stiggelhout, A. M. (2002). Health related quality of life in Parkinson's disease: a systematic review of disease specific instruments. Journal of Neurology Neurosurgery and Psychiatry, 72, 241-248. - Peto, V., Jenkinson, C., & Fitzpatrick R. (1998). PDQ-39: a review of the development, validation and application of a Parkinson's disease quality of life questionnaire and its associated measures. Journal Neurology, 245, 10-14. - Schrag, A., Selai, C., Jahanshahi, M., & Quinn, N. P. (2000). The EQ-5D - a generic quality of life measure-is a useful instrument to measure quality of life in patients with Parkinson's disease. Journal of Neurology Neurosurgery and Psychiatry, 69, 67-73. - Schrag, A., Jahanshahi, M., & Quinn, N. (2000). What contributes to quality of life in patients with Parkinson's disease?. Journal of Neurology Neurosurgery and Psychiatry 69, 308-312.

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§ 4.12 Clinical Question 9: Unified Parkinson’s Disease Rating Scale (UPDRS) Preface: The occupational therapists of the department Neurology in the University Medical Centre Ljubljana use the measurements and information given by taken off the assessment Unified Parkinson's Disease Rating Scale (UPDRS) (Fahn, et al.,1987) through other disciplines in their client-centred occupational therapy treatment as a way to identify the occupational performance components of a person with Parkinson’s disease. The occupational therapists want to know if there is evidence for using these measurements and information of the assessment UPDRS measured by other disciplines in their client-centred occupational therapy with people with Parkinson’s disease As an occupational therapist it is important to know what the impact of Parkinson’s disease is on the physical, cognitive and affective performance components. The UPDRS measures these components. Person/problem People with Parkinson’s disease

Intervention Using the measurements and information of the Unified Parkinson's Disease Rating Scale (UPDRS) collected by other disciplines

Co-intervention -

Outcome To identify the occupational performance components of a person with Parkinson’s disease

Clinical Question: What is the evidence for the value of using the measurements and information of the Unified Parkinson's Disease Rating Scale (UPDRS) collected by other disciplines as a means to identify the occupational performance components of a person with Parkinson’s disease? Evidence: There is no evidence found concerning this particular question. Discussion: Although there is no evidence found concerning the particular clinical question, we want to mention information that, in our opinion, can be related to the question. There is some evidence about the use of the UPDRS in the occupational therapy: There are indications that the assessment Unified Parkinson's Disease Rating Scale (UPDRS) can be used during the occupational therapy treatment of people with Parkinson’s disease. The UPDRS measures the intensity of the symptoms that people with Parkinson’s disease experiences. The UPDRS is not an occupational therapy assessment but is aimed specifically on people with Parkinson’s disease. From literature (Gaudet, 2002), becomes clear that the UPDRS is reliable, valid and internationally to use. The assessment however is not clientcentred (Best, Kok, Sinnema, & Winder, 2004).

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There are many evaluations developed to measure the impact of Parkinson’s disease on the physical, cognitive and affective performance components (Canter, De La Torre, & Mier, 1961; Chouinard, Ross-Chouinard, Annable, & Jones, 1980; England & Schwab, 1956; Fahn et al., 1987; Hoehn & Yahr, 1967; Webster, 1968). Many of this disease specific scales do not account for the complications of more advanced Parkinson’s disease, such as dyskinesias, onoff phenomia, mental difficulties and so on. A tool, which captures these aspects, is the Unified Parkinson’s Disease Rating Scale (UPDRS). It is considered the gold standard for the measurement of the signs and symptoms of Parkinson’s disease (Fahn, et al., 1987). It was developed in an attempt to assimilate the best of the current scales at the time (Lakke, 1990) and includes sections that evaluate mentation and physical abilities. The UPDRS also includes measurement of both the on an off performances, in order to account for the daily fluctuations of the disease (Gaudet, 2002). The stages of the Hoehn and Yahr correlate well with the UPDRS (Martinez-Martin, et al., 1994; Richards, Marder, Cote, & Mayeux, 1994; van Hilten, van der Zwan, Zwinderman, & Roos, 1994) It is considered a useful tool when defining the broad stages of Parkinson’s, but it lack sensitivity (Diamonds & Markham, 1983). Overall the UPDRS is considered a reliable and valid tool (van Hilten et al., 1994; Geminiani et al., 1991). Martinez-Martin et al. (1994) found that the UPDRS has high internal consistency but they state that this may be in response to the redundancy of items. They describe the UPDRS as a “highly reliable scale”. These authors also describe the convergent and criterion validity as excellent. Richards et al. (1994) found good to excellent interrater reliability in a study examining the motor component of the UPDRS. Poor agreement among three experienced neurologist however was found for speech disorder and facial mobility. Henderson et al. (1991) found that clinical experience was not a major factor in determining the reliability ratings of several performance test of the UPDRS. Rather, these authors stated, “idiosyncrasy of particular performances was a major source of unreliable ratings” (Henderson, et al., 1991). The test could take close to 40 minutes to administer and this could limit its utility in some clinical settings. Another limitation of the UPDRS is that it is not a client centred tool and does not account for the variability in the presentation of the disease (Gaudet, 2002). The UPDRS was designed to assess the disability and handicap of Parkinson's disease patients. UPDRS has been validated for Parkinsonian patients and has been extensively used in a wide variety of settings. Increasing scores indicate increasing impairment. The only data available from Fiorani 97 summarised subsections I, II and III (mental, ADL and motor). It would have been more useful to have had a breakdown of the scores for each subsection, as occupational therapy may have most effect on ADL. However UPDRS does have the advantage that it has been validated in Parkinson's disease (Deane, Ellis-Hill, Playford, BenShlomo, & Clarke, 2001). There is some evidence found about the UPDRS in general: The UPDRS motor score is clearly sensitive to detecting changes coincident with placebo treatment. Stated differently, but with the same data, detractors could argue that the UPDRS motor scale is clearly vulnerable to placebo influences. We consider this latter interpretation particularly important, as clinicians using the motor scale may have previously considered it to be devoid of strong placebo vulnerability because it is investigator-derived and does not depend on patients’ conscious or unconscious preconceptions. In most clinical trials, when the motor and ADL scores are reported separately, higher prioritisation is given to the motor Final Project – January 2005 Maria de Boer and Fieke Wermers

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score as a measure of objective data and as a primary outcome measure (Goetz, Leurgans, Raman, & the Parkinson’s Study Group, 2002). Our results demonstrate that the ADL, motor, and total UPDRS have excellent test-retest reliability. Reliability was also very good for the symptom-based subscales. The test-retest reliability of the mental section was somewhat lower than for other sections of the UPDRS (Siderowf, et al., 2002). The lower test-retest reliability of individual UPDRS items reflects the fact that our sample of early-PD patients generally received low scores on individual items (Siderowf, et al., 2002). The results of this study complement other report of the metric properties of the UPDRS previously published. Several studies have documented the interrater reliability of the UPDRS. Bennet and colleagues found excellent test-retest reliability for the total UPDRS and its subscales when the instrument was applies in a sample of healthy elderly individuals who were being screened for extrapyramidal signs. However, to our knowledge, no study specifically intended to evaluate the test-retest (interrater) reliability of the UPDRS in patients with PD has been published. This is also the first time that the test-retest reliability of symptom-based subscales has been reported (Siderowf, et al., 2002). There is a need for a ‘simplified’ PD scale and one with more-homogenous sections than UPDRS. The Short Parkinson’s Evaluation Scale (SPES) is easier and quicker than UPDRS and maintains many psychometric properties similar to those of the UPDRS, notwithstanding the reduction of the number of items and ordinal levels of each item studied here. The tremor items would be better represented as a separate section in both scales (Martignoni, Franchignoni, Pasetti, Ferriero, & Picco, 2003). The UPDRS has found broad acceptance for the evaluation of PD and has been used in many trials. Nine studies extensively tested and evaluated this scale. Like the Webster, the UPDRS ADL section is conceptually unclear as it includes several impairment items (salivation, falling, freezing, tremor, and sensory complains). Nevertheless, the UPDRS demonstrates high internal consistency and interrater reliability, shows moderate construct validity, and has a stable factor structure. Even across off- and on-stage examinations, the ME section of this scale has a stable factor structure and high internal consistency. The high internal consistency of the ADL and motor section most scored by a previous study that successfully reduced the ADL and motor section of the UPDRS to eight items each, without losing reliability or validity. The time to administer was stated 10-20 minutes and assessed as 16.95 minutes (Ramaker, Marinus, Stiggelbout, & van Hilten, 2002). Taken together, the evaluation of the impairment and disability sections as a whole show that the UPDRS is a reliable and valid scale, although these sections include some redundant and unreliable items (Ramaker, et al., 2002). In this study the UPDRS was found to be the most thoroughly studied scale with overall better clinometric properties compared to other scales (Ramaker, et al., 2002). The UPDRS is the most widely used clinical rating scale for Parkinson’s disease. The data cited in this critique highlight the well-established and respected status of the UPDRS within the movement disorders, scientific, and regulatory communities. The Task Force members Final Project – January 2005 Maria de Boer and Fieke Wermers

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unanimously considered the concept of a single clinical rating scale to be an important tool for clear and consistent communication among movement disorder colleagues. The strengths of the UPDRS are many, and the scale provides a relatively comprehensive assessment of motoric aspects of Parkinson’s disease. Extensive clinimetric analyses have already been conducted on the UPDRS, providing it both scientific and clinical credibility. Some items, however, have poor interrater reliability, and individual text anchors or instructions for data acquisition are ambiguous. The UPDRS is less comprehensive in its assessment of non-motor features of the disease (Movement Disorder Society Task Force on Rating Scales for Parkinson's Disease, 2003). Conclusion: There is no evidence found for the value of using the measurements and information of the Unified Parkinson's Disease Rating Scale (UPDRS) collect by other disciplines as a means to identify the (client-centred) occupational performance components of a person with Parkinson’s disease. Nevertheless there are indications that the assessment UPDRS can be used during the occupational therapy treatment of people with Parkinson’s disease Strengths of the UPDRS include its wide utilization, its application across the clinical spectrum of Parkinson’s disease, its nearly comprehensive coverage of motor symptoms, and its clinimetric properties, including reliability and validity. Weaknesses include several ambiguities in the written text, inadequate instructions for raters, some metric flaws, and the absence of screening questions on several important non-motor aspects of Parkinson’s disease. The UPDRS is also not a client-centred assessment, something occupational strives at. References: - Best, B., Kok, J., Sinnema, G., & Winder, E. (2004). De ergotherapeutische behandeling van cliënten met de ziekte van Parkinson, een eerste concept richtlijn. Amsterdam: Hogeschool van Amsterdam/Nijmegen: UMC St. Radboud. - Canter, G., De La Torre, R., & Mier, M. (1961). A method for evaluating disability in patients with Parkinson’s disease. Journal of Nervous and Mental Disease, 133, 143-147. - Chouinard, G., Ross-Chouinard, A., Annable, L., & Jones, B. (1980). Extrapyramidal Symptom Rating Scale. Canadian Journal of Neurological Sciences, 7, 233. - Deane, K. H. O., Ellis-Hill, C., Playford, E. D., Ben-Shlomo, Y., & Clarke, C. E. (2001). Occupational therapy for Parkinson’s disease. The Cochrane Database of Systematic Reviews, Issue 2, Art. No.: CD002813. DOI: 10.1002/14651858.CD002813. - England, A., & Schwab, R. (1956). Postoperative medical evaluation of 26 selected patients with Parkinson’s disease. Journal of American Geriatric Society, 4, 1219-1232. - Diamond, S., & Markman, C. (1983). Evaluating the evaluations: Or how to weigh the scales of parkinsonian disability. Neurology, 33, 1098-1099. - Fahn, S., Elton, R. L., & members of the UPDRS committee (1987). Unified Parkinson’s disease rating scale. In: S. Fahn, C. Marsden, M. Golstein and D. B. Calne (eds.: Recent Developments in Parkinson’s Disease. New York: MacMillan. - Gaudet, P. (2002). Measuring the impact of Parkinson’s disease: An occupational therapy perspective. Canadian Journal of Occupational Therapy, April, 104-113. - Geminiani, G., Cesana, B., Tamma, F., Contri, P., Pachetti, C., Carella, F., Piolti, R., Martignoni, E., Giovanni, P., Girotti, F., & Caceni, T. (1991). Interobserver reliability between neurologists in training of Parkinson’s disease rating scales : A multicenter study. Movement Disorders, 6, 330-335. Final Project – January 2005 Maria de Boer and Fieke Wermers

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Goetz, C.G., Leurgans, S., Raman, R., & the Parkinson’s Study Group. (2002). PlaceboAssociated Improvements in Motor Function: Comparison of Subjective and Objective Sections of the UPDRS in Early Parkinson’s Disease. Movement Disorders, 17, 283-288. Henderson, L., Kennard, C., Crawford, T., Day, S., Everitt, B., Goodrich, S. Jones, F., & Park, D. (1991). Scales for rating motor impairment in Parkinson’s disease: Studies of reliability and convergent validity. Journal of Neurology, Neurosurgery, and Psychiatry, 54, 18-24. Hoehn, M., & Yahr, M. (1967). Parkinsonism: Onset, progression, and mortality. Neurology, 17, 427-442. Lakke, J. (1990). Assessment and measurement. In G. Stern (Ed.), Parkinson’s Disease. Baltimore: The Johns Hopkins University Press. Martignoni, E., Franchignoni, F., Pasetti, C., Ferriero, G., & Picco, D. (2003). Psychometric properties of the Unified Parkinson's Disease Rating Scale and of the Short Parkinson's Evaluation Scale. Neurology Science, 24, 190-191. Martinez-Martin, P., Gil-Nagel, A., Gracia, M., Gomez, J., Martinez-Sarries, M., Bermejo, F., The Cooperative Multicentric Group. (1994). Unified Parkinson’s Disease Rating Scale characteristics and structure. Movement Disorder, 9, 76-83. Movement Disorder Society Task Force on Rating Scales for Parkinson's Disease. (2003). The Unified Parkinson's Disease Rating Scale (UPDRS): status and recommendations, Movement Disorder Society Task Force on Rating Scales for Parkinson's Disease. Movement Disorders, 18, 738-750 Ramaker, C., Marinus, J., Stiggelbout, A. M., & van Hilten, B. J. (2002). Systematic evaluation of rating scales for impairment and disability in Parkinson's disease. Movement Disorders, 17, 867-876. Richards, M., Marder, K., Cote, L., & Mayeux, R. (1994). Interrater reliability of the Unified Parkinson’s Disease Rating Scale motor examination. Movement Disorders, 9, 8991. Siderowf, A., McDermott, M., Kieburtz, K., Blindauer, K., Plumb, S., Shoulson, I., & the Parkinson Group. (2002). Test-Retest Reliability of the Unified Parkinson’s Disease Rating Scale in Patients with Early Parkinson’s Disease: Results from a Multicenter Clinical Trial. Movement Disorders, 17, 758-763. Van Hilten, J., van der Zwan, A., Zwinderman, A., & Roos, R. (1994). Rating impairment and disability in Parkinson’s diseases: Evaluation of the Unified Parkinson’s Disease Rating Scale. Movement Disorders, 9, 84-91. Webster, D. (1968). Clinical Analysis of the disability in Parkinson’s disease. Modern Treatment, 5, 257-282.

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Stage 4: Identify Strengths and Resources The strengths and resources that the client and the occupational therapist bring to the Occupational Performance Process are identified (Stanton, Thompson-Franson, & Kramer, 1997). § 4.13 Clinical Question 10: Home-environment Preface: The occupational therapist of the department Neurology in the University Medical Centre Ljubljana do not visit the home environment of the people with Parkinson’s disease. Their question is if there is evidence for the value of visiting the home-environment of a person with Parkinson’s disease, while getting occupational therapy practice in the University Medical Centre Ljubljana. Is enabling and enhancing the client to meaningful occupation in their own environment not very important in the occupational therapy? Can an occupational therapist give optimum occupational therapy practice to a person with Parkinson’s disease without visiting the environment where the occupation has to take place? Person/problem People with Parkinson’s disease (who might experience problems in their occupation in their homeenvironment)

Intervention Visiting the homeenvironment of a person with Parkinson’s disease

Co-intervention Not visiting the home-environment

Outcome To give an adequate advice for the homeenvironment of the person with Parkinson’s disease

Clinical Question: What is the evidence for the value of visiting the home-environment of the person with Parkinson’s disease in comparison with not visiting the home-environment as a means to give an adequate advice for the home-environment of the person with Parkinson’s disease. Evidence: In the first concept guideline (Best, Kok, Sinnema, & Winder, 2004) two forms of occupational therapy practice at home are being distinguished. The first form is that the people with Parkinson’s disease are treated out of the clinical situation or in day treatment, while living in the home situation. The second form is that the person with Parkinson’s disease is treated from the community occupational therapy. The first form of home-visits, where people with Parkinson’ disease are treated out of the clinical situation or day treatment, is mainly of application in literature. From literature becomes clear that occupational therapy practice at home of people with Parkinson’s disease has a number of advantages. The ‘before and after research’ of Patti et al. (1996) promotes occupational therapy practice at home to allow recommended changes to accommodate the patient, to encourage maximum independence, and educate patient and family about the importance of activities that could maintain (among other things) security

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and can be applied under accompaniment in the home situation what is practised in clinical setting. Furthermore becomes clear from the opinion of experts that a home occupational therapy assessment can help to promote a safe environment, ensuring that the home is functionally optimised (Martin & Wieler, 2003). From the qualitative investigation, conducted by the project group, has become clear that occupational therapy practice at home of people with Parkinson’s disease are efficient This is because people with Parkinson’s disease are influenced a lot by the surrounding and it mostly takes effort to generalise. In this way, frequently the communication with the caregiver is also more simple (Best, et al., 2004). Recommendation: There are indications that for people with Parkinson’s disease occupational therapy practice at home has advantages (Best, et al., 2004). Discussion: In the literature there is also evidence found about the other related subject. This is the second form of occupational therapy at home: - Community occupational therapy practice (occupational therapy practice in the homeenvironment). The evidence we found for this related subject and (mostly) in our opinion related to the people with Parkinson’s disease, we will discuss below: Home visits by occupational therapists can prevent falls among older people who are at increased risk of falling. However, the effect may not be caused by home modifications alone. Home visits by occupational therapist may also lead to changes in behaviour that enable older people to life more safely in both home and external environment (Cumming, et al., 1999). The conclusion of a randomised trail study is that home visits from occupational therapists during hospitalisation of older patients at risk for falling can help to preserve the patient's autonomy (Pardessus, et al., 2002). The results of a study of the reflection on practice, about if home visits are prior to discharge worthwhile in geriatric inpatient care, exhibited a strong focus on physical disability, environmental issues and assistive devices. The clients were in general satisfied with the home visit interventions but their perceptions and responses to problems also differed from those of the therapists. When there was dissatisfaction, it resulted from serious delay in delivery of home modifications or devices, which posed a risk to their safety at home. For multiple reasons, both pre- and postdischarge home visits were found to be very important for the clients' safety (Nygard, Grahn, Rudenhammar, & Hydling, 2004). The findings in the study of Park, Fisher and Velozo (1994) support the idea that process skill abilities are effected by the environment to a greater degree than the motor skill abilities. And that for persons living in the community, the familiar home environment tends to support instrumental ADL performance. If an occupational therapists wants to know how a person performs IADL’s, the therapist should evaluate that person’s performance in the environment which the client will be functioning.

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Conclusion: There are indications that a home-visit by an occupational therapist for people with Parkinson’s disease has advantages as a means to give an adequate advice for the homeenvironment. In the interest of the security included. Also the assessment and treatment by an occupational therapist in the home-environment is being supported by research. References: - Best, B., Kok, J., Sinnema, G., & Winder, E. (2004). De ergotherapeutische behandeling van clienten met de ziekte van Parkinson, Een eerste concept richtlijn. Amsterdam: Hogeschool van Amsterdam / Nijmegen: UMC St. Radboud. - Cumming R. G., Thomas M., Szonyi G., Salkeld G., O'Neill E., Westbury C., & Frampton G. (1999). Home visits by an occupational therapist for assessment and modification of environmental hazards: a randomised trial of falls prevention. Journal of American Geriatrics Society. 47(12), 1397-1402. - Martin, W. R., & Wieler, M. (2003). Treatment of Parkinson’s Disease. Canadian Journal of Neurological Science, 30 Supplement I, S27-33. - Nygard, L., Grahn, U., Rudenhammar, A., & Hydling, S. (2004). Reflecting on practice: are home visits prior to discharge worthwhile in geriatric inpatient care? Scandinavian Journal of Caring Sciences. 18(2), 193-203. (abstract) - Patti, F., Reggio, A., Nicoletti, F., Sellaroli, T., Deinite, G., & Nicoletti, Fr. (1996). Effects of rehabilitation therapy on Parkinsonian’s disability and functional independence. Journal of Neurological rehabilitation. 10, 223-231. - Pardessus, V., Puisieux, F., Di Pompeo, C., Gaudefroy, C., Thevenon, A., & Dewailly, A. (2002). Benefits of home visits for falls and autonomy in the elderly: a randomized trial study. American Journal of Physical Medicine & Rehabilitation.. 81(4), 247-252. - Park S., Fisher A. G., & Velozo C. A. (1994). Using the assessment of motor and process skills to compare occupational performance between clinic and home settings. American Journal of Occupational Therapy. 48(8), 697-709. - Stanton, S., Thompson-Franson, T., & Kramer, C. (1997). Linking Concepts to a process for Working With Clients. In Townsend, E (Ed.), Enabling Occupation: An Occupational Therapy Perspective (pp 56-94). Ottowa: Canadian Association of Occupational Therapists Publications.

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§ 4.14 Clinical Question 11: Caregiver Preface: The occupational therapists of the department Neurology of the University Medical Centre Ljubljana want to know if there is evidence for involving the caregiver of the person with Parkinson’s disease in the occupational therapy practice. In the first concept guideline (Best, Kok, Sinnema, & Winder, 2004) is understood with the term ‘caregiver’: a person who take the required care for the person with Parkinson’s disease. This is for example family, neighbours or friends. The care is for free and in principle reciprocal (NVE, 1999). Therefore the term caregiver is not used for the volunteer who grants care in his or her surrounding by means of for example a volunteer aid support point who gives care to third parties. We want to use this understanding of the term ‘caregiver’ in this context. Person/problem People with Parkinson’s disease

Intervention Involving the caregiver(s) in the occupational therapy treatment

Co-intervention -

Outcome To identify the strengths and resources of the person with Parkinson’s disease

Clinical Question: What is the evidence for the value of the involvement of the caregiver(s) in the occupational therapy treatment of the person with Parkinson’s disease as a means to identify the strengths and resources of the person with Parkinson’s disease? Evidence: A conclusion of the study about (among other things) determining emotional and social distress of caring for a patient with Parkinson’s disease are: Caring for a spouse with Parkinson's disease is associated with emotional and social distress, underlining the importance of also assessing the needs of carers (Aarsland, Larsen, Karlsen, Lim, & Tandberg, 1999). Regarding to the study of McCall is the experience of each person with Parkinson's disease and each carer is different. Valuing their experience and involving them as partners in care will greatly improve their quality of life (McCall, 1995). The conclusion of the study about the factors of importance to the caregivers’ burden experienced by family caregivers of Parkinson's disease patients, is that to ease the caregiver burden, attention should be paid to patient functional status and caregivers depressive symptoms. The sense of coherence in caregivers is probably more difficult to influence (Caap-Ahlgren & Dehlin, 2002). The conclusions of the study about observations of spouse-patient couples with Parkinson’s disease where: When designing interventions for patients with Parkinson’s disease, it is important for physical therapists and other health care providers to recognize the impact of the disease on both the patient and the caregiver spouse. The health care provider should be aware of discordance in perception of the two individuals, as well as burden of care giving on the Final Project – January 2005 Maria de Boer and Fieke Wermers

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spouse. These factors should be taken into consideration in designing care plans (Cutson, Zhu, Whetten, & Schenkman, 2004). The carer outcomes in the review of Deane, Ellis-Hill, Playford, Ben-Shlomo, & Clarke, (2001) where: Approximately 75% of patients with Parkinson's disease live with a partner, who is usually of a similar age and may have disabilities of their own (Lloyd, 1999). The impact of caring for a person with Parkinson's can be severe (O’ Reilly, Finnan, Allwright, Davey Smith, & Ben–Shlomo, 1996), and it would be hoped that an intervention such as occupational therapy could have a positive effect on the carer's life as well as the patient's. Discussion: The discussion will be divided in the following two categories, regarding to the involvement of the caregiver(s) in the occupational therapy practice: - Information from / for the caregiver - Caregiver’s burden Information from / for the caregiver: From the qualitative research, conducted by the project group (Best, et al., 2004), has become clear that it is desirable that the caregivers are in any case at the beginning of the treatment present to get the possible problems of the person with Parkinson’s disease and its environment clear. The experience is that the caregiver indicates other and more restrictions then by the person himself. If the caregiver is not present at the beginning of the treatment, it is possible that a part of the information is being missed. Recommendation: The project group (Best, et al., 2004) believes that a conversation and the presence of the caregiver is very important as a supplement on the information that has already been obtained of the person with Parkinson’s disease. From the qualitative investigation, conducted by the project group (Best, et al., 2004), comes forward that it is difficult to stipulate the moment on which the obstructions of the caregiver will discussed. From literature it becomes clear that this is possible by means of asking specific questions during the intake (Bergsma & Van der Plaats, 2000). Recommendation: There are indications that after the intake it is possible to value how the person and its environment functions and if a caregiver experiences (over-)load (Best, et al., 2004). From the qualitative investigation, conducted by the project group, comes forward that the occupational therapists tried to involve the caregiver as much as possible in (among other things) the treatment phase at the occupational therapy practice of the person with Parkinson’s disease. There comes forward that the situation of the client and the caregiver can be clarified by giving recommendations to the caregiver concerning accompanying the client, information concerning way to get the supplies, information concerning possible present cognitive problems of the client and overload (Best, et al., 2004). Recommendation: There are indications that involving the caregiver in the practice of the person with Parkinson’s disease is necessary (Best, et al., 2004).

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Caregiver’s burden: In client-centred occupational therapy practice, the client is viewed within the context of unique environments. These environments often involve others whose lives are affected by the primary client’s problems. As one person goes through the problem solving process, it affects those in the related environment. The client who learns enough self-care skills to go home but not enough to be independent may contribute to actual or potential problems for others at home. The caregiver who experiences loss of occupational performance momentum as a result of primary client problems may become the exhausted caregiver with potential inability to continue caring for them self as well as the primary client. Problem solving is often a tandem or related effort within environments so that problems are not shifted from one person to another. Occupational therapists work closely with clients and others within their environments to promote problem-solving behaviour, maintain momentum, enrich daily living, and prevent dysfunction (Fearing, Law, & Clark, 1997). At present there is still insufficiently known about the current situation and the specific needs of the caregivers to be able to develop this care well. (Nederlandse Hartstichting, 2004) Additional research will be necessary to be able to give care to the caregivers in a correct manner (Best, et al., 2004). From the qualitative research, conducted by the project group, has come forward that there must be given much attention on (changed) rolls of pattern between client and partner. The adoption of activities of the client towards the caregiver increases, which has shifting of care and rolls takes as a result. This opinion is supported by literature, which passes forward that many caregivers (frequently partners) report overload phenomena and related to this, (mental) health problems. Carers report that the risk of overload becomes increased, because caregivers will take more tasks (Nederlandse Hartstichting, 2004) (LOT, 2004). Recommendation: There are indications that it is important to give much attention on (changed) rolls of pattern between client and partner in the treatment of the person with Parkinson’s disease (Best, et al., 2004). Findings of the non-random convenience study of Berry and Murphy (1995) indicated a statistically significant linear relationship between stages of Parkinson’s disease and care receivers' functional ability and between care receivers' functional and social ability and caregivers' hours of giving care. Caregivers' health was associated with diminished physical functioning of care receivers. Caregivers' age, years of marriage, and educational level were associated with their social, psychological, and financial well-being. The main implication for nursing practice is that elderly family caregivers must be included in mutually developed care plans; they are at high risk for diminished well-being because of the time and energy involved in providing needed care. There was also another conclusion in the study of Aarsland et al., we want to mention: Mental symptoms of parkinsonian patients were the most consistent and powerful predictors of caregiver distress, suggesting that identification and treatment of mental symptoms may reduce distress in caregivers of subjects with Parkinson's disease (Aarsland, et al, 1999). The project group (Best, et al., 2004) believes that it is important to measure how much the caregiver can take and what the burden at the caregivers are. This is possible by using several

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assessments, namely: Caregiver Strain index (CSI), the Sense or Competence Questionnaire (SCQ) and the Caregiver Reaction Assessment (CRA) (Nederlandse Hartstichting, 2004). Recommendation: The project group believes that there can be used standardised and validated assessments at measuring the care charge the caregiver (Best, et al., 2004). It appears that there is need for a treatment for client and partner. The advantage of this is that the partner / caregiver is immediately involved in the occupational therapy practice (Best, et al., 2004). Conclusion: Regarding to the literature we found we can say that at present there is still insufficiently known about the current situation and the specific needs of the caregivers to be able to develop this care well and therefore further research is necessary. But there is some evidence that the involvement of the caregiver of a person with Parkinson’s disease within the occupational therapy is necessary. Regarding to the evidence we found, there are indicators that attention should be paid to the psychical and mental condition of the caregiver. This in benefit of the quality of life for the person with Parkinson’s disease and the caregiver. The indications for involvement of the caregiver have a dual meaning; first of all because of the information from the caregiver and information for the caregiver. And second, because of the caregiver’s burden. References: - Aarsland, D., Larsen, J. P., Karlsen, K., Lim, N. G., & Tandberg, E. (1999). Mental symptoms in Parkinson's disease are important contributors to caregiver distress. International Journal of Geriatric Psychiatry. 14(10),866-74. - Bergsma, J., & van der Plaats, A. (2000). De ergotherapeutisch advisering aan de mantelzorger van de oudere met een chronische aandoening in het kader van de enkelvoudige extramurale Ergotherapie (EEE). Amsterdam: Hogeschool van Amsterdam - Berry, R. A., & Murphy, J. F. (1995). Well-being of caregivers of spouses with Parkinson’s disease. Clinical Nurs. Research. 4(4), 373-386. (abstract) - Best, B., Kok, J., Sinnema, G., & Winder, E. (2004). De ergotherapeutische behandeling van clienten met de ziekte van Parkinson. Een eerste concept richtlijn. Amsterdam: Hogeschool van Amsterdam / Nijmegen: UMC St. Radboud. - Caap-Ahlgren, M., & Dehlin, O. (2002). Factors of importance to the caregiver burden experienced by family caregivers of Parkinson's disease patients. Aging Clinical Exp. Research.14(5),371-377. (abstract) - Cutson, T. M., Zhu, C. W., Whetten, K., & Schenkman, M. (2004). Observations of spouse-patient couples with Parkinson disease. Journal of Neurologic Physical Therapy. 28(3), 122-128. (abstract) - Deane, K. H. O., Ellis-Hill, C., Playford, E. D., Ben-Shlomo, Y., Clarke, C. E. (2001). Occupational Therapy for Parkinson’s disease. The Cochrane Library. Issue 3. - Fearing, V. G., Law, M., & Clark, J. (1997). An Occupational Performance Process Model: Fostering client and therapist alliances. Canadian Journal of Occupational Therapy. 64(1), 7-15. - LOT, Vereniging van Mantelzorgers (2004). Mantelzorg: de rek is eruit! Bunnik. - Lloyd M. The new community care for people for people with Parkinson's disease and their carers. (1999) In: Percival R. and P. Hobson (Ed.), Parkinson' Disease: Studies in Psychological and Social Care. (pp.13-59).London: BPS Books. Final Project – January 2005 Maria de Boer and Fieke Wermers

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McCall, B. (1995). Coping with Parkinson's disease: the patient's and carer's experience... British Journal of Therapy & Rehabilitation. 2(10), 549-554. (abstract) NVE (1999). Beroepsprofiel ergotherapeut. Utrecht: Uitgeverij LEMMA. O’Reilly, F., Finnan, F., Allwright, S., Smith, D. G., & Shlomo, B. Y. (1996). The effects of caring for a spouse with Parkinson's disease on social, psychological and physical wellbeing. British Journal of Gen. Practice. 46(410), 507-512 (abstract) Visser-Meily, Drs, A., & Heugten, Dr, van, C. (2004). Zorg voor de mantelzorg. Den Haag: Nederlandse Hartstichting.

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§ 4.15 Clinical Question 12: Multidisciplinary approach Preface: The occupational therapists of the department Neurology of the University Medical Centre Ljubljana have in their practice with people with Parkinson’s disease multidisciplinary meetings. The therapists want to know what the evidence is from using a multidisciplinary approach regarding to the treatment of people with Parkinson’s disease. An Editorial in the British Medical Journal (Kale & Menken, 2004) questions: Who should manage people with Parkinson’s disease? And continues with: Like most patients with chronic neurological disorders they need to be looked after by a multidisciplinary team. Person/problem People with Parkinson’s disease

Intervention Using a multidisciplinary approach

Co-intervention -

Outcome To improve the quality of the occupational therapy practice in interest of the person with Parkinson’s disease

Clinical Question: What is the evidence for the value of using a multidisciplinary approach as a means of improving the quality of the occupational therapy practice in interest of the person with Parkinson’s disease? Evidence: A multidisciplinary approach is essentially with members of the team varying according to the needs of the individual, and his or her family. The overall goal is to allow the individual to achieve the highest possible level of independence function (Martin & Wieler, 2003). Occupational therapists believe that occupational therapy should ideally be delivered in the context of a multidisciplinary team, but there is no clear opinion concerning the best composition of the team (Deane, Ellis-Hill, Dekker, Davies, & Clarke, 2003). Discussion: Parkinson’s disease has a chronic course, because of this there is being strived for the highest possible quality of life for the client. The most important aspect what stipulates the offer of care for the client, is the question of the client (Kaemingk, et al., 2003). The multidisciplinary rehabilitation programme used in the observational study of Trend et al. was client-centred. By focusing on the practical problems experienced by people with Parkinson's disease in their everyday lives, it broke down discipline-based demarcations. It recognized the importance of multiple professions for addressing the variety of problems experienced by people with Parkinson's disease (Trend, Kaye, Gage, Owen, & Wade, 2002). Intensive multidisciplinary rehabilitation for people with Parkinson’s disease and their carers result in immediate improvement in patients’ mobility, speech, depression and health- related quality of life, but no change in carer well-being. And another conclusion in this study was that the participants reported knowledge gains and high satisfaction (Trend, et al., 2002). Final Project – January 2005 Maria de Boer and Fieke Wermers

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The largest study identified by the search was a crossover randomised controlled trail of a multidisciplinary intervention (Trend, et al., 2002; Wade, et al., 2002) providing individual physiotherapy, occupational therapy, speech and language therapy, specialist nursing and assess to social services care managers, and group education and support. It showed significant immediate improvement across the range of outcome measures, but at six months only a marginal mobility gains had been maintained (Gage, & Storey, 2004). There have been some critical notes made (Playford, 2003) regarding to the research of Wade, et al. (2003) that should be taken into consideration while assessing this randomised controlled study. There are different professions that support a multidisciplinary approach regarding Parkinson’s disease. During the interviews, the experts of different professions (occupational therapy, physiotherapy, speech and language therapy, geriatrician and a neurologist) revealed a commitment to joint working on the part of the five interviewees and recognition of the significant part played by different members of the team (Chesson, Cockhead, & Maehle, 1999). The Parkinson’s Disease Society (PDS) of the United Kingdom recommends that a multidisciplinary approach should be adopted. Although drugs are the principal treatment, they should be supplemented with occupational therapy, speech and language therapy, physiotherapy and dietary advice. Although there has been some improvement in access to these therapies, the number of people receiving help is still far too low (Hope, 1999). Finally we want mention that further research is required to evaluate the medium and longer term cost-effectiveness of multidisciplinary programmes, and to distinguish specific from non-specific effects (Gage & Storey, 2004). Conclusion: There are indications that occupational therapy should be delivered in the context of a multidisciplinary team, but there is no clear opinion concerning the best composition of the team A multidisciplinary approach is essentially with members of the team varying according to the needs of the individual, and his or her family. Further research about the multidisciplinary approach and the value is necessary. References: - Ashburn, A., Jones, D., Plant, R., Lovgreen, B., Kinnear, E., Handford, F., & Loader, S. (2004). Physiotherapy for people with Parkinson's disease in the UK: an exploration of practice. International Journal of Therapy and Rehabilitation. 11(4), 160-167. - Chesson, R., Cockhead, D., & Maehle, V. (1999). Expert opinion on therapy for people with Parkinson’s disease. British Journal of Therapy and Rehabilitation. 60(3), 124-129. - Deane, K. H. O., Ellis-Hill, C., Dekker, K., Davies, P., & Clarke, C. E. (2003). A Delphi Survey of Best Practice Occupational Therapy for Parkinson’s Disease in the United Kingdom. British Journal of Occupational Therapy. 66(6), 247-254. - Gage, H., & Storey, L. (2004). Rehabilitation for Parkinson's disease: a systematic review of available evidence. Clinical Rehabilitation. 18(5), 463-482. Final Project – January 2005 Maria de Boer and Fieke Wermers

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Hope, S. (1999). Parkinson’s disease: aetiology and treatment. British Journal of Therapy and Rehabilitation. 6(3), 112-118. Kaemingk, M., Esch van, M., Horstink, M., Rood, B., Smaets, C., Spaendonk, K., Swart de, B., & Tinselboer, L. (2003). Multidisciplinaire zorgplannen Parkinson. Nijmeegs Kenniscentrum, Neurorevalidatie. Arnhem: Drukkerij Kemperman Kale, R., Menken, M. (2004). Who should look after people with Parkinson’s disease? Multidisciplinary teams are needed to address the needs of patients. British Medical Journal. 328, 62-63. Martin, W. R., & Wieler, M. (2003). Treatment of Parkinson’s Disease. Canadian Journal of Neurology Science. 30 Supplement 1, S27-33. Playford, E. D. (2003). Multidisciplinary rehabilitation for people with Parkinson's disease, editorial commentary. Journal of Neurology, Neurolsurgery and Psychiatry. 74(2), 148-149. Trend, P., Kaye, J., Gage, H., Owen, C., & Wade, D. (2002). Short-term effectiveness of intensive multidisciplinary rehabilitation for people with Parkinson's disease and their carers. Clinical Rehabilitation. 16(7), 717-725. Wade, D. T., Gage, H., Owen, C., Trend, P., Grossmith, C., & Kaye, J. (2003). Multidisciplinary rehabilitation for people with Parkinson’s disease: a randomised controlled study. Journal of Neurology, Neurolsurgery and Psychiatry. 74(2), 158-162.

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Stage 5: Negotiate Targeted Outcomes and Develop Action Plans The client and the occupational therapist negotiate the client outcomes to be targeted in occupational therapy, and develop action plans. The plans specify what the client and occupational therapist will do to resolve or minimize limitations to occupational performance in order to achieve the targeted outcome (Stanton, Thompson-Franson, & Kramer, 1997). § 4.16 Clinical Question 13: Referral Preface: The people with Parkinson’s disease get a referral to the occupational therapy of the department Neurology of the University Medical Centre Ljubljana by the neurologist. The occupational therapists want to know what the evidence is for an early referral to the occupational therapy. At present time people with Parkinson’s disease get mostly referred in stage three till five (referring to the scale of Hoehn&Yahr; see chapter three) to the occupational therapy of the department Neurology. Parkinson’s disease has a chronic course, because of this there is being strived for the highest possible quality of life for the client. The most important aspect what stipulates the offer of care for the client, is the question of the client (Kaemingk, et al., 2003). Is there no question of the person with Parkinson’s disease who is visiting the Neurologist in the University Medical Centre Ljubljana regarding his or her occupation in stage one or two? And has the person with Parkinson’s disease enough information about the possibility’s and content of the occupational therapy service to be able to give a well-considered answer to this question? It will depend on stage of Hoehn&Yahr in which the person with Parkinson’s disease is, what kind of treatment approach the occupational therapist will suggests (concerning the question of the person with Parkinson’s disease). Different (kind of) goals will be set in different stages of illness, this is because of the chronic course of Parkinson’s disease. This is the reason we want to mention this particular question in this stage of the Occupational Performance Process Model. Person/problem People with Parkinson’ disease

Intervention Early referral to the occupational therapy

Co-intervention -

Outcome To optimize the effect of the occupational therapy interventions

Clinical Question: What is the evidence for the value of early referral to the occupational therapy as a means to optimize the effect of the occupational therapy interventions of a person with Parkinson’s disease?

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Evidence: Poor rates of access to occupational therapy service may be partially explained by the paucity of evidence for the efficacy of occupational therapy in Parkinson’s disease (Deane, Ellis-Hill, Playford, Ben-Shlomo,& Clarke, 2001). The needs of people with Parkinson’s disease may vary over the course of the disease. The majority of the occupational therapists receive referrals at the complex or palliative stages of the disease. The current service organisation tends towards crisis management rather than preventative programmes (Deane, Ellis-Hill, Dekker, Davies, & Clarke, 2003 1). Occupational therapists agree that occupational therapy is a lifelong need for people with Parkinson’s disease and considered that people with Parkinson’s disease should have an openaccess self-referral service. Most occupational therapists think that people with Parkinson’s disease should be referred at diagnosis, should have an annual review and should be reviewed every time there is a significant functional decline (Deane, Ellis-Hill, Dekker, Davies, & Clarke, 2003 2). Recommendation: The project group believes that it is needed that clients with Parkinson’s disease get occupational therapy shortly after diagnosis, but that further research is important so that the appreciation of a early referral and the exact time of the referral can be stipulated (Best, Kok, Sinnema, & Winder, 2004). Discussion: The five experts from different health care professionals (occupational therapy, physiotherapy, speech and language therapy, geriatrician and a neurologist) who have been interviewed, believed that the ideal referral would be ‘the sooner the better’ so that: 1. Patients could be aware of what therapy might offer. 2. Advice could be given fairly early on and ‘fairly simple measures’ put into place, such as the provision of a home exercise program or grab rails at home. 3. Secondary complications might be avoided, or at least an attempt made at prevention. Early referral was seen by the therapists as also being beneficial for the carer (Chesson, Cockhead, & Maehle, 1999). In the qualitative research, conducted by the project group, it comes forward that when at first sight no restrictions are being experienced, frequently, when points of interest are being put forward during the first conversation of the treatment this incites thinking and taking initiative. This indicates that treatment at an early stage is desirable. It appears that clients with Parkinson’s disease do not always experience problems in occupation. From the qualitative research also comes forward that the clients have the need for information about the process of illness to be able themselves to prepare on the future situation (Best, et al., 2004). From the qualitative investigation, conducted by the project group, becomes clear that treatment at an early stage can take away uncertainties, because information can be given to the client and their caregiver, concerning the problems which can occur in the future. In this way, some problem situations can be prevented. Clients with Parkinson’s disease can learn more easily at an early stage, because there are less cognitive impairments being experienced than at a later stage than at an early stage. Another advantage of early referral is that clients get earlier a clear picture concerning what the occupational therapy can offer them in the Final Project – January 2005 Maria de Boer and Fieke Wermers

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future. Early information to the caregiver has, among other things, the advantage that they have more knowledge concerning the current and future situation and have the possibility to anticipate (Best, et al., 2004). The project group finds this method of working not a demandled way of working, because there is not assumed there is a question of aid of the client, but the care is offered (Kuiper, Verhoef, Louwde, & Cox, 2004). For this reason the project group recommends further research on, among other things, the effectiveness of the treatment and the satisfaction of the client at an early referral (Best, et al., 2004). Treatment approaches in occupational therapy for Parkinson’s disease were found to be nearly equally divided into remedial, compensatory and adaptive, with a slightly favour toward compensatory in the pilot study of Janša. This fits with the organisation of Parkinson’s disease patients referred to occupational therapy in the sample of this pilot study (more patients with Parkinson’s disease in intermediate and late stages of the disease than early stages). The remedial approach is most relevant in the early stage of the disease as it aims to restore the underlying impairment. Adaptive interventions include the introduction of aids and equipment and environmental adaptations. The compensatory model focuses on methods that help Parkinson’s disease patients to perform daily tasks as independently and in the most satisfying way that their residual ability allows and may be based on cognitive and sensory cueing techniques (Janša, 2002). Conclusion: Early referral of people with Parkinson’s disease to occupational therapy is being supported. But little evidence is found to back-up this statement. Further research is necessary to value the importance of an early referral to an occupational therapist. References: - Best, B., Kok, J., Sinnema, G., & Winder, E. (2004). De ergotherapeutische behandeling van clienten met de ziekte van Parkinson, Een eerste concept richtlijn. Amsterdam: Hogeschool van Amsterdam / Nijmegen: UMC St. Radboud. - Chesson, R., Cockhead, D., & Maehle, V. (1999). Expert opinion on therapy for people with Parkinson’s disease. British Journal of Therapy and Rehabilitation. 60(3), 124-129. - 1 Deane, K. H. O., Ellis-Hill, C., Dekker, K., Davies, P., & Clarke, C. E. (2003). A Survey of Current Occupational Therapy Practice for Parkinson’s Disease in the United Kingdom. British Journal of Occupational Therapy. 66(5), 193-200. - 2 Deane, K. H.O., Ellis-Hill, C., Dekker, K., Davies, P., & Clarke, C. E. (2003). A Delphi Survey of Best Practice Occupational Therapy for Parkinson’s Disease in the United Kingdom. British Journal of Occupational Therapy. 66(6), 247-254. - Deane, K. H. O., Ellis-Hill, C., Playford, E. D., Ben-Shlomo, Y. & Clarke, C. E. (2001). Occupational Therapy for Parkinson’s disease. Cochrane Review. - Janša, J. (2002). OT in Europe, EPDA Focus, European Parkinson’s Disease Association. Issue 27, 14-15. - Kaemingk, M., Esch van, M., Horstink, M., Rood, B., Smaets, C., Spaendonk, K., Swart - de, B., & Tinselboer, L. (2003). Multidisciplinaire zorgplannen Parkinson. Nijmeegs Kenniscentrum, Neuronrevalidatie. Arnhem: Drukkerij Kemperman. - Kuiper, C., Verhoef, J., Louwde, D., & Cox, K. (2004). Evidence Based Practice voor paramedici, methodiek en implementatie. Utrecht: Uitgeverij LEMMA. BV. - Stanton, S., Thompson-Franson, T., & Kramer, C. (1997). Linking Concepts to a process for Working With Clients. In Townsend, E (Ed.), Enabling Occupation: An Occupational Final Project – January 2005 Maria de Boer and Fieke Wermers

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Therapy Perspective (pp 56-94). Ottowa: Canadian Association of Occupational Therapists Publications.

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Stage 6: Implement Plans Through Occupation Plans are implemented, reviewed, and modified on an ongoing basis. The plans address occupational performance issues by taking action to remove or reduce limitations in the occupational performance components and/or environmental conditions (Stanton, ThompsonFranson, & Kramer, 1997). § 4.17 Clinical Question 14: Cueing Preface: The occupational therapists of the department Neurology in the University Medical Centre Ljubljana use the intervention cueing as a way to treat occupational performance issues in activities of daily life of people with Parkinson’s disease. The therapists want to know if there is evidence for use cueing in the occupational therapy practice with people with Parkinson’s disease. Occupational therapy is directed towards educating the individual on the effects of Parkinson’s disease and assisting in including maintaining his abilities for as long as is feasible. Maintenance of independence in daily living skills in order to alleviate limitations caused by rigidity and/or tremor can be one of the occupational therapy goals of people with Parkinson’s disease (Beattie, 1996). Person/problem People with Parkinson’s disease

Intervention Using cueing

Co-intervention -

Outcome To improve the activities of daily living

Clinical Question: What is the evidence for the value of using cueing as a means of improving the activities of daily living of people with Parkinson’s disease? Evidence: There is no evidence found for this particular question Discussion: Although there is no evidence found concerning the particular clinical question, we want to mention information that, in our opinion, can be related to the question. Information about cueing techniques with people with Parkinson’s disease: In Parkinson’s disease, a deficit in a specific brain area (the basal ganglia) results in disturbed internal cueing of automatic, sequential movements, such as walking. Alternative cueing techniques, which utilise a different pathway in the brain, can improve the quality of movement by providing an alternative means to guide movements. Cueing can be divided into two categories: cognitive and external cueing. Cognitive cues are cues that are generated in one’s mind, for example counting in one’s head to time, stepping or paying extra attention to individual sub-movements of a movement sequence.

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External cues can be in the form of visual, auditory and tactile information that can trigger movements or that can provide rhythmic support to improve the quality of movements. An example of a widely known and accepted method to improve walking ability is Auditory Rhythmic Cueing using a metronome: subjects are asked to synchronise their steps to the rhythm of a sound beat. This technique can improve the quality of walking and it can help in overcoming and preventing so-called freezing episodes in which patients with Parkinson’s disease report ‘being glued to the ground’. In the Rescue project, we investigate two alternatives, besides a metronome, to provide rhythmic support during walking-related activities: a flashing light attached to a pair of spectacles and a small vibration-device attached to the wrist. Besides a rhythmic beat, flash or vibration, external cueing can also be in the form of a pattern of repetitive transverse lines on the ground (which has been shown to improve freezing gait in Parkinson patients) (Rescue project, 2002). There is some information found about the use of cueing techniques in the occupational therapy treatment of people with Parkinson’s disease: Because of the person-specific rather than disease-specific approach within the occupational therapy, often the interventions noted could be used with any person with a diagnosis that leads to a mobility problem. However, there was one main intervention mentioned which was specific to living with Parkinson’s disease. This was the use of cueing techniques, including visual cues such as lines on the floor and auditory cues such as rhythmic music or counting (mentioned 150 times by the occupational therapists) (Deane, Ellis-Hill, Dekker, Davies, & Clarke, 2003). There is some evidence found about the effect of different cueing techniques for people with Parkinson’s disease: A study of Ma, Trombly, Wagenaar, & Tickle-Degnen (2004) demonstrated that a single auditory cue affected movement kinematics of patients with Parkinson’s disease in at least the first two steps of a sequential movement. Understanding the effect of cueing on movement kinematics helps therapists decide when to use the cue. The findings of faster, more forceful, more efficient, more stable, but less smooth movement in the signal present condition suggest that therapists could provide external cues according to their goals. A study of Suteerawattananon et al. (2004) showed that either visual or auditory cues significantly improved gait performance in Parkinson’s disease. Gait speed was significantly increased by auditory cues, as well as the combination of both cues compared to an uncued condition. Visual cues influenced stride length more than cadence. Auditory cues demonstrated a greater influence on cadence than on stride length. The combination of cues did not show an additive effect for improving cadence or stride length. Instead, the combined condition improved gait speed similar to auditory cues alone. Cueing may be one of the strategies to reduce gait difficulties in patients with Parkinson’s disease and this maneuver should be incorporated in clinical scales used to assess gait and balance difficulties. Clinical application of cues may be another model of physical therapy for treatment of patients with Parkinson’s disease. A study of Oliveira et al. investigated whether micrographia in patients with Parkinson's disease is lessened either by giving visual targets or by continually reminding them that they Final Project – January 2005 Maria de Boer and Fieke Wermers

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should write with a normal amplitude. The conclusion of this study showed that whereas the visual cues directly specified the required amplitude the auditory reminders did not. One effect of external cues is that they draw attention to the goal, and thus encourage the patients to write less automatically (Oliveira, Gurd, Nixon, Marshall, & Passingham, 1997). Parkinson's disease ultimately becomes manifest in the patient's performance of activities of daily living (ADL). By investigating which impairments contribute to limitations in ADL, it may be possible to gain a better understanding of the clinical features and to find opportunities for intervention. Movement strategies based on consciously controlled execution and the use of cueing strategies that elicit intended motor actions both seem a promising and valid approach. The combined use of both strategies should be investigated further (Kamsma, 2004). Conclusion: There is no evidence found for the value of using cueing as a means of improving the activities of daily living of people with Parkinson’s disease. From literature comes clear that there was one main intervention mentioned by occupational therapists, which was specific to living with Parkinson’s disease. This was the use of cueing techniques, including visual cues such as lines on the floor and auditory cues such as rhythmic music or counting We found some studies, which showed different effects of different cueing strategies. One study demonstrated that a single auditory cue affected movement kinematics of patients with Parkinson’s disease in at least the first two steps of a sequential movement. Another study showed that either visual or auditory cues significantly improved gait performance in Parkinson’s disease. Another study showed that whereas the visual cues directly specified the required amplitude the auditory reminders did not. One effect of external cues is that they draw attention to the goal, and thus encourage the patients to write less automatically. Finally another study showed that movement strategies based on consciously controlled execution and the use of cueing strategies that elicit intended motor actions both seem a promising and valid approach. However, understanding the effect of cueing on activities of daily living of people with Parkinson’s disease can helps occupational therapists decide when to use the cue. Further investigation is therefore required. References: - Beattie, A. (1996). Parkinson's disease. In Turner, A., Foster M., & Sybil E. J., Occupational Therapy and Physical Dysfunction (pp. 535-569). New York: Churchill Livingstone. - Cooper, B. A., Letts, L., & Rigby, P. (1993). Exploring the use of colour cueing on an assistive device in the home: six case studies, Physical & Occupational Therapy in Geriatrics, 11, 47-59. - Deane, K. H. O., Ellis-Hill, C., Dekker, K., Davies, P., & Clarke, C. E. (2003). A Survey of Current Occupational Therapy Practice for Parkinson's Disease in the United Kingdom. British Journal of Occupational Therapy, 66, 193-200. - Kamsma, Y. P. (2004). Implications of motor and cognitive impairments for ADL and motor treatment of patients with Parkinson's disease. Nederlands Tijdschrift Fysiotherapie, 114, 59-62.

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Ma, H. I., Trombly, C. A., Wagenaar, R. C., & Tickle-Degnen, L. (2004). Effect of one single auditory cue on movement kinematics in patients with Parkinson's disease. Amercian Journal of Physical Medicine & Rehabilitation, 83, 530-536. Oliveira, R. M., Gurd, J. M., Nixon, P., Marshall, J. C., & Passingham R. E. (1997). Micrographia in Parkinson's disease: the effect of providing external cues. Journal of Neurology, Neurosurgery, and Psychiatry, 63, 429-433. http://www.rescueproject.org/overview Suteerawattananon, M., Morris, G. S., Etnyre, B. R., Jankovic, J., & Protas, E.J. (2004). Effects of visual and auditory cues on gait in individuals with Parkinson's disease. Journal of the Neurological Sciences, 15, 63-69.

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Stage 7: Evaluate Occupational Performance Outcomes The outcomes of the occupational performance process are identified. If the targeted outcomes have been achieved, services are completed. If the targeted outcomes have been achieved, the targets are reviewed. If continuation of the process is perceived to be beneficial to the client, parts of process are repeated (Stanton, Thompson-Franson, & Kramer, 1997). § 4.18 Clinical Question 15: Re-assessing COPM Preface: The occupational therapists of the department Neurology in the University Medical Centre Ljubljana are using the Canadian Occupational Performance Measure (COPM) (DNHW & CAOT, 1990) as a way to re-assessing occupational performance issues and evaluate occupational performance outcomes and client satisfaction of people with Parkinson’s disease. The therapists want to know if there is evidence for using the COPM as a reassessment and evaluation in the occupational therapy practice with people with Parkinson’s disease. As an occupational therapist it is important to evaluate the occupational performance outcomes from the client’s perspective. Re-assessing by using the COPM is a way of evaluating. When it is time to evaluate the outcome it is important to ensure that the evaluation examines whether the client-desired outcomes have been achieved rather than evaluating whether the goals have been achieved (Sumsion, 1999). Person/problem People with Parkinson’s disease

Intervention Using the COPM

Co-intervention -

Outcome To re-assess the occupational performance issues and evaluate the occupational performance outcomes and clientsatisfaction

Clinical Question: What is the evidence for the value of using the COPM as a means to re-assess occupational performance issues and evaluate the occupational performance outcomes and the clientsatisfaction of people with Parkinson’s disease? Evidence: There is no evidence found concerning this particular question. Discussion: Although there is no evidence found concerning the particular clinical question, we want to mention information that, in our opinion, can be related to the question. There is some evidence found about the use of COPM in general with people with Parkinson’s disease.

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There are indications that the Canadian Occupational Performance Measure (COPM) can be used during the occupational therapy treatment with people with Parkinson’s disease (Best, Kok, Sinnema, & Winder, 2004). For further comprehensive information, this can be found at Clinical Question 1. There is some evidence found about re-assessing the COPM with Parkinson’s disease: Bowling (1997) in a review of a study by Slevin, Plant, Lynch, Drinkwater and Gregory (1988), (as cited in Bowling, 1997) found that the measures of outcome should take into account an individual’s self assessment. She also states: “… few indicators attempt to measure patients’ perceptions of improvement or satisfaction with level of improvement or performance; yet it is this element which is largely responsible for predicting whether individuals seek care, accept treatment and consider themselves to be well and recovered” (Bowling, 1997) (Gaudet, 2002). With those who have fluctuating Parkinson’s disease, the identification of issues must be scored separately for both the on and off states (ensuring that the same issues are scored for both states) (Gaudet, 2002). There is some evidence found about performing evaluation by using COPM with people with physical disabilities: The measurement scale of the COPM requires that the client score each desired outcome with respect to its importance, the client’s perceived ability to accomplish the item today, and the client’s satisfaction with the noted level of perceived ability. The advantage of this scale is that is shows progress toward the desired outcome, rather than indicating only whether it was fully achieved or not. The disadvantage is that it does not indicate whether the degree of improvement was sufficient to make a difference in the client’s life, although a change in the satisfaction score certainly connotes increased client satisfaction with performance. A combination of the dichotomous measure, of ‘yes’ or ‘no’, and the COPM measure may be advisable. This system is only adaptable to behavioural and performance-related desired outcomes. Outcomes such as ‘I want a pain-free insertion of my temporary line’ are not able to be rated on this scale. This was a desired outcome for a dialysis client. Most occupational therapy outcomes would appropriate for the COPM system (Gage, 1999). There is some evidence found about the evaluation of the occupational therapy treatment with people with Parkinson’s disease in general: An evaluation of the occupational therapy treatment can take place during and after a treatment with people with Parkinson’s disease. After an evaluation the term of treatment with the client can be continued (at the same way), adapted or concluded (NVE, 1999). There can be used several assessments at this evaluation (Best, et al., 2004). The project group (Best, et al. 2004) believes that it is advisable that after each treatment with the client there should be an evaluation taken place. From the qualitative research, conducted by the project group, comes forward that after every treatment a short evaluation should be taken place. Within this evaluation there must be examined which goals are reached at that moment, if the client is satisfied with that, if he/she Final Project – January 2005 Maria de Boer and Fieke Wermers

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wants to continue and if there are still other problems the client experience in the daily functioning. The project group (Best, et al., 2004) believes that it is advisable that the caregiver is present at the final conversation/evaluation. From the qualitative research, conducted by the project group, comes forward that it is experienced as positive that the caregiver is present at the final conversation/evaluation, because it important to know how the practical application of the treatment continues in the home situation. The project group (Best, et al., 2004) believes that it is advisable that before concluding the treatment term there should be written a final report. From the qualitative research, conducted by the project group, comes forward that in the final report is described the following: on which goals are worked, possibly which interventions are used, and what are the results are. This report is made for the person who had referred the client and for the client if he/she has that need. To save time and to cover the costs the report can be typed in the presence of the client and/or the caregiver. Conclusion: There is no evidence found for the value of using the COPM as a means to re-assess occupational performance issues and evaluate the occupational performance outcomes and the client-satisfaction of people with Parkinson’s disease. There are indications that the Canadian Occupational Performance Measure (COPM) can be used during the occupational therapy treatment with people with Parkinson’s disease. The advantage of COPM, in performing evaluation with COPM with people with physical disabilities, is that it shows progress toward the desired outcome, rather than indicating only whether it was fully achieved or not. The disadvantage is that it does not indicate whether the degree of improvement was sufficient to make a difference in the client’s life, although a change in the satisfaction score certainly connotes increased client satisfaction with performance With those who have fluctuating Parkinson’s disease, the identification of issues must be scored separately for both the on and off states (ensuring that the same issues are scored for both states). In general we can say that there are indications that an evaluation of the occupational therapy treatment of people with Parkinson’s disease should be taken place after each treatment, that the caregiver should be present at the final conversation/evaluation and that before concluding the treatment term there should be written a final report. References: - Best, B., Kok, J., Sinnema, G., & Winder, E. (2004). De ergotherapeutische behandeling van cliënten met de ziekte van Parkinson, een eerste concept richtlijn. Amsterdam: Hogeschool van Amsterdam/UMC St. Radboud - Bowling, A. (1997). Measuring Health A Review of Quality of Life Measurement Scales. Philadelphia; Open University Press. - Gage, M. (1999). Physical disabilities: meeting the challenges of client-centred practice. In T. Sumsion (Ed.), Client-Centred Practice in Occupational Therapy (pp. 89-101). Edinburgh: Churchill Livingstone.

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Gaudet, P. (2002). Measuring the impact of Parkinson’s disease: An occupational therapy perspective. Canadian Journal of Occupational Therapy, April, 104-113. Sumsion, T. (1999). The client-centred approach. In T. Sumsion (Ed.), Client-Centred Practice in Occupational Therapy (pp. 15-20). Edinburgh: Churchill Livingstone.

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§ 4.19 Clinical Question 16: Follow-up Preface: The occupational therapists of the department Neurology in the University Medical Centre Ljubljana sometimes have a follow-up with people with Parkinson’s disease, by seeing them as an outpatient. Mostly people with Parkinson’s disease don’t have a follow-up treatment by an occupational therapist. The therapists want to know if there is evidence for follow up in the occupational therapy practice with people with Parkinson’s disease. As occupational therapists quality of life of people with Parkinson’s disease is an important issue. An adequate occupational therapy process can contribute to this quality of life. Person/problem People with Parkinson’s disease

Intervention Continue the occupational therapy treatment after dismissal from the hospital

Co-intervention -

Outcome Improve adequately the quality of the occupational therapy treatment in interest of the person with Parkinson’s disease

Clinical Question: What is the evidence for the value of continuation of the occupational therapy treatment after dismissal from the hospital as a means to improve adequately the quality of the occupational therapy treatment in interest of the person with Parkinson’s disease? Evidence: There is found some poor evidence about this particular question: The project group (Best, Kok, Sinnema, & Winder, 2004) believes that a follow-up treatment for people with Parkinson’s disease is advisable because the clients can have a need for occupational therapy in every stage. From the qualitative research, conducted by the project group, has become clear that there is no clear final phase for the occupational therapy treatment with people with Parkinson’s disease, because at every stage other new disabilities that earlier were not present. The project group believes that people with Parkinson’s can have a need to occupational therapy contact at every stage. Discussion: Other literature that we found that mentioned the importance of a follow-up: It is worrying that although Parkinson’s disease is a chronic lifelong disease, current occupational therapy is short term and people with Parkinson’s disease are usually discharged without any follow-up. This in conjunction with the majority of referrals being at the later stages of the disease suggests that the current service organization tends towards crisis management rather than preventative programmes (Deane, Ellis-Hill, Dekker, Davies, & Clarke, 2003). A more preventative programme of occupational therapy, aimed at preventing falls and reducing inpatient admissions and admissions to nursing homes, may improve the quality of Final Project – January 2005 Maria de Boer and Fieke Wermers

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life of the person with Parkinson’s disease and be more cost-effective (Department of Health, 2001), but this needs to be examined prospectively in a randomised controlled trial (Deane, et al., 2003). The progressive nature of Parkinson’s disease will probably require that a person and his family maintain contact with the occupational therapists over a period of many years. Clearly, it is impractical and unnecessary for the individual throughout the course of the disease. Often, following a period of initial assessment, goal-setting and appropriate intervention, the individual should receive regular re-assessment, advice and/or short periods of intensive therapy at regular intervals. This pattern should enable hum to continue to maximize his functional ability in relation to his life-style and interests and to learn, over a period of time, how to adjust himself to any limitations and to manage life with the disease (Beattie, 1996). Further research is needed into what form of follow-up care would be most effective for maintaining the health-related quality of life of people with Parkinson’s disease and for providing continuing support for their carers (Trend, Kaye, Gage, Owen, & Wade, 2001). Although the useful adjunctive role articulated for nonpharmacological interventions is not disputed by available evidence, a definitive answer is still awaited as to the precise contribution that rehabilitation in different forms can and should make to the management of Parkinson’s disease (Gage & Storey, 2004). Conclusion: There is poor evidence found for the value of continuation of the occupational therapy treatment after dismissal from the hospital as a means to improve adequately the quality of the occupational therapy treatment in interest of the person with Parkinson’s disease. There are indications that a follow-up treatment for people with Parkinson’s disease is advisable because the clients can have a need for occupational therapy in every stage Further research is needed into what form of follow-up care would be most effective for maintaining the health-related quality of life of people with Parkinson’s disease and for providing continuing support for their carers. References: - Beattie, A. (1996). Parkinson's disease. In Turner, A., Foster M., & Sybil E. J., Occupational Therapy and Physical Dysfunction (pp. 535-569). New York: Churchil Livingstone. - Best, B., Kok, J., Sinnema, G., & Winder, E. (2004). De ergotherapeutische behandeling van cliënten met de ziekte van Parkinson, een eerste concept richtlijn. Amsterdam: Hogeschool van Amsterdam/UMC St. Radboud. - Deane, K. H. O., Ellis-Hill, C., Dekker, K., Davies, P., & Clarke, C. E. (2003). A Survey of Current Occupational Therapy Practice for Parkinson's Disease in the United Kingdom. British Journal of Occupational Therapy, 66, 193-200. - Department of Health (2001). National Service Framework for Older People. London: DH. - Gage, H., & Storey, L. (2004). Rehabilitation for Parkinson's disease: a systematic review of available evidence. Clinical Rehabilitation, 18, 463-82. - Trend, P., Kaye, J., Gage, H., Owen, C., & Wade, D. (2002). Short-term effectiveness of intensive multidisciplinary rehabilitation for people with Parkinson’s disease and their carers. Clinical Rehabilitation, 16, 717-725. Final Project – January 2005 Maria de Boer and Fieke Wermers

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Chapter 5:

Apply and evaluate

§ 5.1 Introduction In the chapter there will be given attention to the last two steps of Evidence-based practice. - Application of the result in practice - Evaluate the process and the result These last two steps are inserted in this project to complete the steps that have to be taken, in the method of Evidence-based practice used. We have tried to encourage the implementation of the evidence that has been extracted from literature by giving a presentation about (among other things) the use of the method of Evidence-based practice.

§ 5.2 Step 4: Application of the result in practice At the assessment of the evidence it has been examined if the available evidence is applicable in its own situation. During application of the evidence at the (own) practice, the question is the evidence-based establish paramedical asks, is if the results of the assessed research apply also to the client who is in the practice of the practitioner of him or her at that moment. Globally, the factors which play a role at the application of evidence are emerging from the client, the practitioner and the environment (Kuiper, Verhoef, de Louw, & Cox, 2004). This step of the methodological way of Evidence-based practice is a step we, as a project group, can not take. This step is about the use of the outcomes of the literature research into daily occupational therapy practice of the individual client. This step of Evidence-based practice has overlap with the Implementation Cycle (as a part of the Quality Cycle). Therefore we refer to the chapters about the implementation and evaluation of changes (chapter nine, ten and eleven). Also in the field of the nursing and the paramedical care, beside that of the doctors, there is gradually arising a ‘body of evidence’ concerning what the works the best in which situation. And also there is more and more attention given to the individual preference of the client. It also becomes high time becomes that the practice of skill of working evidence-based are thoroughly and systematically being explained for all paramedical professions and nurses (Kuiper, et al., 2004). Because of the importance of evidence-based practice, we therefore have given a presentation for the people involved and interested others. A presentation about Evidence-based practice and the method of evidence-based practice. This presentation has an exceeding function in relation to our project. The aims of the presentation were (in order of importance): - To implement evidence into practice also the experience of the therapist and the needs of the individual client have to be taken into consideration. This is in the hands of occupational therapists of the department Neurology, using their own experience in

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relation with their own individual client. This presentation is of assistance of the occupational therapists to give a structure to tackle this practice. Evidence-based practice is an important topic in current health care practice. This applies to all practitioners in health care. The presentation is also given to make the people aware of Evidence-based practice and give them information on this subject and the method associated.

The slides of this PowerPoint presentation about Evidence-based practice can be found in Appendix B of this report. The presentation was on the 30th of November 2004 in the department Neurology of the University Medical Centre Ljubljana. By the people involved, we mean: - First of all: the occupational therapists of the department Neurology - the physiotherapists of the department Neurology - the (PD-)nurses of the department Neurology - neurologists of the department Neurology Interested others are: - other occupational therapists of the University Medical Centre Ljubljana - teachers of the department occupational therapy of the University of Health Care

§ 5.3 Step 5: Evaluate the process and the result Evaluation is an essential component of Evidence-based practice. People who have a paramedical profession which work evidence-based, are being stimulated to evaluate their own actions continuously in relation to their use of Evidence-based practice. And they are being stimulated to evaluate the validity and the importance of relevant clinical research. Thereby they must ask themselves always the question: does this treatment work for this client? (Kuiper, et al., 2004) In imitation with the step ‘application of the result in practice’, we, as a project group, can not take this step. This last step has also overlap with the Implementation Cycle (as a part of the Quality Cycle). Therefore we refer to the chapters about the evaluation of changes (chapter eleven). We also want to note that the reasons for presentation about Evidence-based practice that we have given, is also applicable for this step of Evidence-based practice, the evaluation of the process and the result.

§ 5.4 Reference -

Kuiper, C., Verhoef, J., de Louw, D., & Cox, K. (2004). Evidence-based practice voor paramedici. Methodiek en implementatie. Utrecht: Lemma.

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PART-II

QUALITY OF CARE

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CONTENT

PART II: QUALITY OF CARE Introduction........................................................................................................................98 Chapter 6: 6.1 6.2 6.3 6.4 6.5 6.6 6.7

Quality of Care ............................................................................................99 Introduction ...................................................................................................99 Quality...........................................................................................................99 Quality of Care ............................................................................................ 100 Quality Assurance and Quality Improvement............................................... 101 Quality cycle of Grol ................................................................................... 102 Implementation............................................................................................ 103 References ................................................................................................... 104

Chapter 7: 7.1 7.2 7.3 7.4 7.5

Analyse, select and develop ....................................................................... 106 Introduction ................................................................................................. 106 Analysis of possible quality problems .......................................................... 106 Selection of subjects .................................................................................... 107 Developing guidelines or goals for good care............................................... 107 Reference .................................................................................................... 108

Chapter 8: 8.1 8.2 8.3 8.4 8.5 8.6 8.7 8.8

Judgement of actual care........................................................................... 109 Introduction ................................................................................................. 109 The Slovenian Health Care System .............................................................. 109 Klinični Center Ljubljana............................................................................. 110 Department Neurology................................................................................ 111 Department Occupational Therapy (Neurology).......................................... 111 Occupational therapy practice of people with Parkinson’s disease............... 112 Other relevant subjects................................................................................ 119 References .................................................................................................. 120

Chapter 9: 9.1 9.2 9.3 9.4 9.5 9.6 9.7 9.8

Determination of desired changes ............................................................. 121 Introduction ................................................................................................. 121 Stage 1: Name, Validate and Prioritise Occupational Performance Issues .... 121 Stage 2: Select Theoretical Approaches ....................................................... 122 Stage 3: Identify Performance Components and Environmental Conditions . 122 Stage 4: Identify Strengths and Resources.................................................... 124 Stage 5: Negotiate Targeted Outcomes and Develop Action Plans ............... 125 Stage 6: Implement Plans Through Occupation............................................ 125 Stage 7: Evaluate Occupational Performance Outcomes............................... 125

Chapter 10: 10.1 10.2 10.3

Analysis of sticking points regarding change............................................ 126 Introduction ................................................................................................ 126 Ishikawa diagram........................................................................................ 126 Sticking points............................................................................................ 128 10.3.1 Sticking points concerning the personnel support ............................. 128 10.3.2 Sticking points concerning the means ............................................... 128

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10.3.3 Sticking points concerning the organization...................................... 129 10.3.4 Sticking points concerning the social environment ........................... 129 10.4 References ................................................................................................... 130 Chapter 11: 11.1 11.2 11.3 11.4 11.5

Develop plans, adopt change and evaluate ............................................... 131 Introduction ................................................................................................. 131 Development of strategies / plans for adoption change................................. 131 Adoption of the change and the organization of this..................................... 132 Follow up: evaluation of the result ............................................................... 133 References ................................................................................................... 134

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INTRODUCTION – QUALITY OF CARE Part two of the Theoretical Background Report starts by giving some general information about the concept ‘Quality of Care’. Among other things, a description of Quality of Care, the Quality Cycle of Grol, and the Implementation Cycle (as a part of process) will be outlined. The following chapters will give the results of the used Quality Cycle of Grol, step by step. Starting with a chapter about the first three steps: ‘Analysis of possible quality problems’, ‘Selections of subjects’ and ‘Developing of guidelines or goals for good care’. In this chapter there will be referred to part one. The evidence as a conclusion out of our literature research is being used as ‘guidelines or goals for good care’. The next chapter contains the ‘Judgement of actual care’. There will be given an impression of the Slovenian Health Care System, the Klinični Center Ljubljana, the department Neurology, and the department Occupational Therapy. After that, the current occupational therapy practice of people with Parkinson’s disease will be outlined per stage of the OPPM. At the end there will be given some information about the providence of aids, the new building (that is still under constrcution) of the department Neurology and the Slovene Parkinson’s Disease Society. After the ‘Judgement of actual care’ there is made a ‘Determination of desired changes’, by means of giving advises. These advises are reflected per clinical question and classified per stage of the OPPM. Regarding the implementation of the given advises there will be given sticking points. These sticking points are analyzed with help of a so-called Ishikawa diagram. The sticking points for the implementation of the given advises are analyzed concerning four head causes: personnel support, means, organization an social environment. The final chapter contains the last steps of the Implementation Cycle: ‘Development of strategies/plans for adoption change’, ‘Adoption of the change’ and the organization of this’ and finally ‘Follow-up: evaluation of the results’. We did not pass through these last three steps of the Quality Cycle in this project. Nevertheless, in this chapter we want to give the occupational therapists of the department some suggestions for a direction to complete the Quality Cycle by passing through these last three steps.

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CHAPTER 6: Quality of care

§ 6.1 Introduction Quality... you know what it is, yet you don’t know what it is. But that’s selfcontradictory. But some things are better than others, that is, they have more quality. But when you try to say what quality is, apart from the things that have it, it all goes poof! There’s nothing to talk about (Pirsig, 1991). In this chapter the concept ‘quality’ as an aspect of care is being discussed. Furthermore, we question: what the importance of quality within the care is and who are the people and party’s that are involved in the quality of care? In this project we have used a quality of care process model to work towards quality of care in the occupational therapy practice with people with Parkinson’s disease. In this chapter, this model will be introduced by giving some information about the structure and content. Finally, the implementation of changes for the benefit of the quality of care will be discussed. Because this project ‘A step towards filling the gap’ is all about (working towards) the quality of care, we find it important to dedicate a chapter to this subject and give attention to the context in which it stands.

§ 6.2 Quality In literature there is found a lot of information about the term ‘quality’. Every book used about quality (of care) starts with a discussion about the definition and content of quality. But not one gives a straight description. There are many different definitions of the concept ‘quality’. There is one short definition we have found that we want to mention here: Quality is to meet the demands that are made (Crosby, 1987). It is difficult to give a definition of ‘quality’, but on the other hand there is the importance of the subject. Therefore we want to give some characterizations of the concept ‘quality’. The concept ‘quality’ has a number of characterizations (WOK, NHG en LHV, 1994) Final Project – January 2005 Maria de Boer and Fieke Wermers

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Quality is normative: To be able to describe the quality of something, the actual situation is being compared with the desired or ideal situation. That is why quality can be named as a normative concept. • Quality is subjective: Every party involved have their own opinion about what good quality is. Therefore quality is not an objective concept but a subjective concept, because it can be defined and judged differently by the various party’s. • Quality is bound to a subject: The concept quality gets more meaning as it is being related to a concrete subject. For example: ‘quality of care’. • Quality is relative: Under certain conditions quality will be differently judged then under other conditions. (Hollands, Hendriks, Ariëns, & Verheggen, 2003) •

§ 6.3 Quality of care What is quality of care? Quality is an ambiguous concept. It depends on who (person) assess the quality; when and where (time and place) quality becomes assessed. Judgement concerning quality comes about comparison, by comparing expectations (desirable care) with actual care (Bik, Driessen, & Kuiper, 1998). Often is the definition of Donabedian (1982) being used as a starting point at the development around the concept ‘quality of the care’. This definition reads: Quality is the extent of similarity between criteria of good care (desirable care) and the practice of that care (actual care). Donabedian brings a moment of comparison and an evaluation -, assessment-component in the definition. Quality is the result of an evaluation process or of a process of realisation. (Hollands, et al., 2003). In Donabedian’s view, quality is the product of two factors, one being the science and technology of health care and the other the application of that science and technology in actual practice (Eldar, 2003). How can quality of care be classified? In this project we want to mention the aspect approach of Donabedian (1982) to classify the aspects of care under. The information from which inferences can be drawn, regarding to the quality of care, can be classified under three categories: ‘structure’, ‘process’, and ‘outcome’. - Structure denotes the attributes of settings in which care occur. - Process denotes what is actually done in giving and receiving care. - Outcome denotes the effects of care on the health status of patients and populations” (Donabedian, 1982). What are the aims of quality of care? Three aims of quality of care, mentioned by Timmermans, Sluijs, Dekker, & den Hartog (1994), are: - to specify (specify the granted care), - to improve (action for improvement), Final Project – January 2005 Maria de Boer and Fieke Wermers

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- and to preserve (care for conservation). De Bekker (1995) mentions also ‘to master’ as an activity of quality of care. ‘To master’ refers to creating conditions to guarantee the continuation of the whole process of methodical quality of care on long term as a never-ending story. Therefore, besides guaranteeing quality itself, also the quality of care as a method (the conditions and the organisation around it) must be structurally fitted in the management of an institution. What is the importance of quality of care? Quality of care is an important issue nowadays. Some reasons mentioned for the fact that quality of care is an important issue, are: - clients and client organisations are getting more emancipated, - professionals feel the need (and are forced) to improve the quality of their professions. - increasing complexity of the care, - and also economical motives can be named (Bik, Driessen, & Kuiper, 1998). Nowadays people in health care are also more and more aware of the fact that transparency of care is an important issue. Transparency of care means that practioners have to account for all choices in the health care process. All parties involved have to be able to form a view in the quality of the care that is offered and about the systems of care. Transparency of the quality, as a distinguishing mark of the offer of care, asks for transparency of the offer of care by: nature, content, process and effectiveness (Kreukels & Braam, 2003). Which people/party’s are involved in the (quality of) care? There are different party’s involved in health care: Intern level: - Users of care (clients, consumers, insured people, organisations etc.) - Professionals in care (providers of care) - Institutions (Management) Extern level: - Health insurance company’s - Government (Politics) (de Bekker, 1995; van der Hulst, 2002). Quality of care is at first the responsibility of the professional an ongoing area for special attention. It means that always another aspect of (occupational therapy) the care qualifies for improvement and change. The phases are always passed through again, in order to get a satisfactory result. The practitioners discuss the problem in this system; the management is responsible for the improvement and the implementation of the change in the care. Management is also responsible for passing through the phases and the ‘finishing of the circle’. There can be talk of it, that it is both a cyclic and linear process (Thomas, 1998).

§ 6.4

Quality Assurance and Quality Improvement

Quality knowledge is a systematic and professional assurance and improvement of the quality of care (Harteloh & Casparie, 1998). Among other things criteria are used to give an indication of desired quality against which the criteria can be used to gauge actual care. The measurement takes place by comparing what is the desirable against what is actually taking place. This measurement is generally called Final Project – January 2005 Maria de Boer and Fieke Wermers

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‘quality assessment’. The term ‘evaluation’ is also sometimes used. However, evaluation is generally a more comprehensive study concerned with determining the extent to which a planned intervention achieves predetermined objectives in a systematic and scientific manner. The results of the assessment can be used in two ways. Firstly, things which can be regarded as satisfactory, may be accepted and maintained. This presupposes that it was “quality” which was defined in the first place. This is called ‘quality assurance’. For things which turn out to be “unsatisfactory”, an attempt at improvement should be made. This is ‘quality improvement’. Quality assessment should never be carried out as an end in itself. It cannot be isolated from quality assurance and quality improvement (Marr & Giebing, 1994). Donabedian is certain that the concept of quality of care can be defined and measured against a standard and that subsequent adjustments can be made and quality “assured” or “improved”. He knows that the term “continuous improvement” may be more useful than “assurance” in that it reminds us that no level of quality can be totally satisfactory, as the expectations of patients and providers are continually shifting upwards (Eldar, 2003). Though we know much about assessing quality, much remains to be known (Donabedian, 1988).

§ 6.5 Quality cycle of Grol The aim of a process model (concerning the quality of care) is that practitioners can identify, analyse and solve the experienced practice problems on systematic a way by using a method. (Thomas, 1998). A process model (concerning the quality of care) is (mostly) cyclically, methodically and systematically. The steps which are roughly passed through are, make a plan, carry out, evaluate and adjust (Thomas, 1998). In this final project the project group has chosen to use the Quality cycle of Grol (1994) as the model for the process of the project. The final project can be seen as a process to work towards improvement of the quality of care. There are more process models that give guide to work towards improvement of the quality of care and are applicable in this setting in health care then the Quality cycle of Grol. The main reasons we have chosen this particular process model are: -

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In this process model of Grol much attention is being paid to the implementation of changes. This is an important factor in carrying through changes in interest of the improvement of care. Also an important factor is the fact that we, as a project group, can not do the implementation. This is the task of the involved practitioners of the department Neurology of the University Medical Centre Ljubljana. But with the use of the quality cycle of Grol, including the implementation cycle, we can give the people involved an assistance for the continuation of the process. To develop an ‘evidence-based’ occupational therapy ‘program’ is a part of the question of this project. The use of the method of evidence-based practice fits nicely in the Quality cycle.

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The evaluation of the current care is a part of the question of this project. Also the evaluation of the current care fits nicely in the Quality cycle.

Figure: A schematic reproduction of the Quality cycle (with Implementation cycle) of Grol Starting point Green Red Quality Cycle Implementation cycle Black

Developing guidelines or goals for good care

A of possible quality Analysis problems

Selection of subjects

Judgement of actual care

Planning and implementation of changes

Determination of desired changes Follow-up: evaluation of the result

Analysis of sticking points regarding change

Adoption of the change and the organisation of this

Development of strategies / plans for introduction change

§ 6.6 Implementation To influence the behaviour of practitioners successfully and thereby also permanent, an indepth method is necessary. At the implementation of products it is an option to use a theory, which is recognizable and well useful. ‘Introduction of changes as a gradually process’ of Grol (1994) is one of those theories of change. ‘Introduction of changes as a gradually process’ (Grol, 1994): 1. Orientation - Circulation: inform. Practitioners must be informed concerning the existence of the change by different means. - Involvement and get the interest. The involvement and interest the practitioners. The matter must stimulate and must be sufficiently relevant for the practice.

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2. Insight - Increase the understanding. It is important that the practitioner understands, what the new working method implies. Clear information must be given, what is expected of the practitioner and for what importance is for this change. - Insight in own practice. To reach acceptance of a new working method, one must firstly have insight in its current working method. Clearly must be what this differs from the new method. 3. Acceptance - Create a positive attitude towards the change. People involved, stipulate their own attitude how they feel about the change. Mostly there is need for discussion concerning for - and disadvantages. - Arouse intention towards change. After an opinion has been formed, it is important that one develops the willingness to will act differently. At this stage is important that the new working method is demonstrated (it is possible). Implementation problems must be inventoried and for this, specific solutions must be developed. 4. Change - Implementation in practice. At this stage the new working method is effectively tried out with the intention that one sees the feasibility of this. Additional education can ensure the required skills. - Conservation of the change. Is that people are tended fall back rapidly in their old behaviour. (Grol., van Everdingen, & Casparie, 1994) (www.cbo.nl).

§ 6.7 -

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References

Bekker, de, J. (1995). Kwaliteit in zicht. Een praktische handleiding voor kwaliteitsverbetering in de verpleging. Utrecht: Uitgeverij Lemma. Bik, M., Diessen, M. J., & Kuiper, C. (1998). Taakgebied ontwikkeling, onderzoek en organisatie. In A. Kinébanian & C. Thomas (Ed.), Grondslagen van de ergotherapie. Maarssen: Elsevier/De Tijdstroom. http://www.cbo.nl Crosby, Ph. B. (1987). De weg naar kwaliteit, succesvol en doelgericht management. Weert. Donebadian, A. (1982). Explorations in Quality Assessment and Monitoring. Vol II. The Criteria and Standards of Quality. Michigan: Ann Arbor, Health Administration Press. Donabedian, A. (1988). The quality of care. How can it be assessed? JAMA. 260(12), 1743-1748. Eldar, R. (2003). Avedis Donabedian. An Introduction to Quality Assurance in Health Care. Oxford: Oxford University Press; 2003; 240 pages; ISBN 0-19-515809-1; price: GBP31.75. A new book by an old master (book review). Croatian Medical Journal. 44(5), 655. Grol, R. T. P. M., Everdingen, van , J. J. E, & Casparie, A. F. (1994). Invoering van richtlijnen en veranderingen, Een handleiding voor de medische, paramedische en verpleegkundige praktijk. Utrecht: De Tijdstroom. Harteloh, P. P. M., & Casparie, A. F. (1998). Kwaliteit van zorg. Van een zorginhoudelijke benadering naar een bedrijfskundige aanpak. Maarssen: Elsevier/De Tijstroom.

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Hollands, L., Hendriks, L., Ariëns, H., Verheggen, F. (2003). Elementen van kwaliteitszorg, begrippen en opvattingen over kwaliteitszorg. Utrecht: Uitgeverij LEMMA BV. Hulst, van der, P. (2002) Reader Kwaliteitszorg. Amsterdam: Hogeschool van Amsterdam Kinébanian, A., Thomas, C. (1998). Grondslagen van de ergotherapie. Maarsen: Elsevier/De Tijdstroom. Kreukels, T., & Braam, Y. (2003). Occupational therapy at the Stroke Unit Ljubljana, Evidence-based practice and quality of care at the occupational therapy department in the acute phase of stroke. Amsterdam: Hogeschool van Amsterdam / Ljubljana: University Medical Centre Ljubljana. Kwaliteitsinstituut voor de Gezondheidszorg CBO (2002). Implementatie, Modelproduct van OKAB, Ondersteuning Kwaliteitszorg Alternatieve Behandelwijzen. (download van internet: www.cbo.nl). Marr, H., & Giebing, H. (1994). Quality Assurance in Nursing, concepts, methods and case studies. Edinburgh: Campion Press Limited. Pirsig, R. (1991). Zen en de kunst van het motoronderhoud (17e druk). Amsterdam: Bakker. Thomas, C. (1998). Procesmodellen in de ergotherapie. In A. Kinébanian & C. Thomas (Ed.), Grondslagen van de ergotherapie. Maarssen: Elsevier/De Tijdstroom. Timmermans, J. E., Sluijs, E. M., Dekker, J., & den Hartog, W. (1994). Kwaliteitsbeleid Paramedische Beroepen. Utrecht: CBO/NIVEL. http://www.who.int/reproductive-health/family_planning/docs/background_paper.doc WOK, NHG, & LHV (1994). Pakket voor deskundigheidsbevordering. Kwaliteistbevordering. 27. Utrecht: NHG.

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CHAPTER 7: Analyse, select and develop

§ 7.1 Introduction This chapter contents the first three steps of the Quality Cycle of the process model of Grol (1994). The first three steps are: - Analysis of possible quality problems - Selection of subjects - Developing guidelines or goals for good care By structuring this chapter (and also the next chapters) into the steps of the Quality Cycle (Grol, 1994) the process of quality assurance and –improvement is being passed through consciously. The aim of this structure of the chapters is to be able to indicate and reflect the process and its result towards the reader. So that the steps that are being taken and the outcomes that will come forward, are being clearly explained.

§ 7.2 Analysis of possible quality problems There are several reasons to turn a certain component of the health care into subject of a quality assurance and quality improvement. An impression or a feeling that possible something’s are not as they should be, can be a reason. Even as signals originating from analyses. Also differ between practitioners or between institution can give a reason to put the process of quality improvement in pace (Grol, van Everdingen, & Casparie, 1994). The ‘Analysis of the possible quality problems’ is the initial of this project. Our consultee, as the representative of the department occupational therapy within the department Neurology, had the following questions: - Evaluate the existing occupational therapy program for people with Parkinson’s disease. - Develop and describe a new ‘evidence-based’ occupational therapy program for clients with Parkinson’s disease, based on the existing program and adapted according the results of evidence-based practice. Final Project – January 2005 Maria de Boer and Fieke Wermers

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How can Quality Assurance be implemented in the occupational therapy service for people with Parkinson’s disease.

So, in our words and in a very short sentence: The occupational therapists want improvement (and assurance) of the quality of the occupational therapy practice for people with Parkinson’s disease, based on evidence. It was the initiative of the occupational therapists to make the choice for this group of clients. The analyses of the possible quality problems was already made. The occupational therapists of the department Neurology are (mostly) dealing with people with stroke (CVA), Parkinson’s disease and Multiple Sclerosis (MS). Their priority in terms of number of clients into the occupational therapy practice is stroke. (A likewise project about stroke is done last year.) Next priority is Parkinson’s disease. The practitioners are trying to set up a extrapyramidal clinic within the department Neurology. The occupational therapy is a member of (multidisciplinary) Parkinson’s disease team. And according to the occupational therapists it makes sense to work in the field according to the current knowledge and therefore it was an opportunity to "evaluate" the existing service, by taking the initiative of this project. In the future, the occupational therapists hope for another project about Multiple Sclerose (MS).

§ 7.3 Selection of subjects The ‘Selection of subjects’ is the process we, as a project group, started with, in this project. In our project, this are the subjects of interest of the occupational therapists concerning the occupational therapy practice of people with Parkinson’s disease. In dialogue with the consultee we have tried to get a clear picture of the situation in the University Medical Centre Ljubljana. The information we needed to create a clear picture, we have mainly gathered by observations and conversations with the occupational therapists. This subjects of concern are determined in association with the consultee. The main intention of the project groups was to filter the subject within the occupational therapy practice of people with Parkinson’s disease that were most important to get investigated concerning the consultee. The result of this was that there eventually were being selected seventeen subjects, regarding to the occupational therapy practice of people with Parkinson’s disease.

§ 7.4 Developing guidelines or goals for good care The ‘Developing guidelines or goals for good care’ is a large step in this project. First of all we have determined what in this particular project is being given as good care. Regarding to the second question of the project this is: occupational therapy practice of people with Parkinson’s disease, based on evidence.

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For this, we have used the method of Evidence-based practice. This method has five steps towards integrating evidence in practice of the individual client. In our case, there is a group of clients in stet of an individual client. In the previous step of the Quality Cycle seventeen subjects have already been extracted from the all the aspects that concern the occupational therapy practice of people with Parkinson’s disease. To write down a clinical question, is the first step of the method of evidence-based practice. Sixteen clinical questions are being made out of sixteen subjects. It was not possible to make a clinical question out of one subject, but because of the importance of this subject, there has been chosen for a discussion. For information about Evidence-based practice and the methodological way of evidencebased practice, we will refer to chapter one (Part one). The process and the results van the ‘Development of goals or goals for good care’ by the means of evidence, you can find in chapter four (Part one).

§ 7.5 Reference -

Grol, R. T. P. M., Everdingen, van , J. J. E, & Casparie, A. F. (1994). Invoering van richtlijnen en veranderingen, Een handleiding voor de medische, paramedische en verpleegkundige praktijk. Utrecht: De Tijdstroom.

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CHAPTER 8: Judgement of the actual care

§ 8.1 Introduction: In this chapter there will be given a description of the current care. This description will be divided in different levels. - On the macro-level there is a short description of the Slovenian Health Care System. - On the meso-level we will deliberate about the structure and organization of the University Medical Centre Ljubljana and of the department Neurology. - On the micro-level there will be a description the department Occupational Therapy within the department Neurology. As well as a description of the occupational therapy practice of people with Parkinson’s disease. At last there will be given some information about different kind of aspects that concern the occupational therapy in the department Neurology. The information the project group has used to be able to make a description of the current care is mainly gathered by interviews with people involved in the project. The questions we used for these interviews, are drawn up by the project group and discussed with the consultee before the interview took place. During the interviews marks are being made of the content of the conversation. Afterwards these notes have been worked up. The information which we have gathered of the consultee has been obtained partially written and partially orally. Further, all information used is checked by the consultee. There is also information gathered by the ongoing process of observation of the environment and process in the University Medical Center Ljubljana and communication with the consultee and the other occupational therapists of the department Neurology. With this chapter the project group wants to achieve to give a clear picture of the present situation in the occupational therapy practice of people with Parkinson’s disease and this all seen in its context.

§ 8.2 The Slovenian Health Care System As a Central European state, Slovenia has a tradition of compulsory health insurance stretching back more than 110 years. The Republic of Slovenia as an independent state adopted its own legislation in the field of health and social care and pension and disability Final Project – January 2005 Maria de Boer and Fieke Wermers

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insurance in 1992. The Health Care and Health Insurance Act was adopted in 1992 and later supplemented. The Pension and Disability Insurance Act was first adopted in 1992 and in 1999 a new law came into force, which introduced pension reform and a new, 'three-pillar' pension system and disability insurance. This health care system is under responsibility of the ministry of Public Health. The care is mostly financed by the sick funds ZZZS. Another part is financed by private insurance and additional payment by patients. Compulsory health protection Health insurance is compulsory for everybody with a permanent address in Slovenia. This insurance paid by the insured, employers and other contributors guarantees access to health services, medicines, technical aids, as well as sickness and other financial benefits. The compulsory health insurance covers most health risks, but not all and not fully. The difference has to be paid by those insured out of their own pockets, or they can pay for additional insurance. For managing health insurance is responsible the Health Insurance Institute. Voluntary health system In 1999, a new Mutual Health Insurance organisation was established to manage voluntary health insurance, taking in all the 1.1 million people with voluntary insurance policies at the Institute of Health Insurance of Slovenia. A special feature of this insurance organisation is that it is owned by its members, those insured, and it functions according to the principles of mutuality and non-profitability. In 2001 Slovenia spend for 1.680 million US dollar in total to health care. This is 8% of the GDP and 860 US dollar per head of the inhabitants. Slovenia is far ahead on other EastEuropean country’s concerning the expenditure pattern. De sick funds ZZZS takes from the 1.680 million 1.261 million US dollar for its account. The ministry of Public Health is responsible for the national hospitals en clinics. Many of these hospitals are connected to university’s and do research too. Apart from national hospitals there are regional health centres. These institutes are also under the responsibility of the ministry, but beside that the region authorities are partly responsible for functioning of these centres. In the private sector are especially the smaller clinics operational, who give for example dental care. Slovenian occupational therapists have been independent since 1994 although the profession remains unrecognised by law. But the Minister acknowledged that it is the way of the future and that the need for occupational therapy would not be overlooked.

§ 8.3 Klinični Center Ljubljana The University Medical Centre Ljubljana is the central medical institution of the Republic of Slovenia and a teaching hospital for undergraduates and postgraduates of Medical Faculty of the University of Ljubljana. The mission of the University Medical Centre Ljubljana is to provide exemplary patient care and foster excellence in health care delivery, research and teaching. The University Medical Centre Ljubljana continues legacy of city hospital and was founded in year 1786. In present time the University Medical Centre Ljubljana is a 2.477 bed public hospital with 6.265 employees (868 doctors, 4.223 health care workers and others) serving population of Final Project – January 2005 Maria de Boer and Fieke Wermers

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approximately 760.000 people. In addition to providing local emergency services and all medical specialties, is the biggest health care organisation in Slovenia and the regional referral centre receiving specialist referrals from the whole Slovenia (2 million inhabitants). The budget for the University Medical Centre Ljubljana is 260 million EUR, used to provide care for 81.982 hospitalised patients and 690.871 ambulatory visits. In some medical specialities, a part of top of the world medicine is present, this includes neuro-surgery, plastic and reconstructive surgery, diabetes care and paediatrics. As a teaching hospital the University Medical Centre Ljubljana is closely linked and collaborating with Medical faculty of University of Ljubljana, and co-operating with a number of eminent hospitals and universities in Europe and also world wide.

§ 8.4 Department Neurology The department Neurology is one of the departments the University Medical Centre Ljubljana. The department is divided in two locations. One is on the fifth floor of the mainbuilding (Zaloška 7). The other location (Zaloška 2) is a smaller building on the hospital area. On the fifth floor of the main-building all neurological disorders and the neurological intensive care unit are situated. In the other building there are also rooms for people with neurological disorders. On the first floor of this building there are two rooms for people with extrapyramidal diseases. The department Neurology on Zaloška 2 has a special Parkinson’s disease team. The team has the following team-members: a neurologist, PD-nurse, physiotherapist, occupational therapist, speech and language therapist, psychiatrist, neuropsychologist, pharmacologist, nutritionist and a social worker. There is a team meeting planned once a week. The main subjects of this meeting are the patients and their progress and the meeting has also educational goals. Occasionally some patients are invited to the meeting itself. According to a neurologist from the department Neurology the main reasons that a person with Parkinson’s disease can be admitted as an ‘inpatient’, are: - The person has an “unusual form” of the disease (that means parkinsonism which is reminiscent to idiopathic Parkinson’s disease, however it does have certain elements that are not compatible with Parkinson’s disease (for example other neurological signs, severe dementia, depression, so-called parkinsonism plus, etc.). - The person is very young. - The person is in an advanced, fluctuating stage of the disease (stage four and five of Hoehn&Yahr; see chapter three).

§ 8.5 Department Occupational Therapy (Neurology) At the department Neurology there are working three occupational therapists, There is an occupational therapist at the department that works there for 17 years, as long as the department exist. The occupational therapists did her academic education at the College for Occupational Therapy in Ljubljana. After that, the occupational therapist went to the University of East London (MSc) and since 2000 she’s assistant professor in the College in Ljubljana. Besides this she followed some professional courses, that means courses in Final Project – January 2005 Maria de Boer and Fieke Wermers

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neurorehabilitation with emphasis on cognition, Bobath course, PNF course, cueing workshop, the AMPS course and many neurological congresses. Another occupational therapist of the department is in function since 2002 and the third occupational therapist since 2003. Both followed the AMPS and COPM course. One therapist also did the Bobath course and a course about perception. The cooperation between the three occupational therapists in the department Neurology is like an on-going communication when the need arises. These meetings are not planned. The occupational therapists of the neurology department are located in the basement of one of buildings of the hospital (Zaloška 2). The room in the basement has an administrative function. There is one room on the second floor where the occupational therapists can give their treatment. Officially this is the room for outpatient treatment. But often there are staying other patients, because of lack of space. Therefore the occupational therapists work also often on the room where the client stays. There are two rooms for people with extrapyramidal disease’s for about seven persons. One room for the men and a room for the women. The outpatient room has a few aids and needs who can be used during treatment. On the ground floor is a bathroom with a shower and adopted sink with mirror. There is also a toilet that the occupational therapists can use for their treatment. Both rooms have grips on the walls. On the same floor is also a kitchen in the room for the nurses the occupational therapists can use to do some kitchen activities. According to a neurologist of the department Neurology, the main questions that are asked of an occupational therapist for occupational therapy service of a person with Parkinson’s disease, concerning the following area’s of content: - Adapting to environment - Teaching compensatory techniques (providing function by tools) - Basic Activities of Daily Living (ADL) The occupational therapists in the hospital get paid by salary. Salary depends on the contract that is governmental and is issued by Slovenian law. The hospital gets money from the government to spend on all aspects of care. The hospital decides how the money is divided within the hospital itself in terms of how many occupational therapists, physiotherapists, nurses, doctors are needed and could be afforded within the budget. The people of Slovenia can get occupational therapy in the hospital with a referral from a doctor. When they have got this referral they can get as much occupational therapy as they need. This is paid by insurance.

§ 8.6 Occupational therapy practice of people with Parkinson’s disease The occupational therapists of the department Neurology use the Occupational Performance Process Model (OPPM) as a process model for their occupational therapy practice with the individual clients. Here is given a short overview of the possible content (per clinical question) of the occupational therapy practice of people with Parkinson’s disease divided into the steps of OPPM, as a description of the current care.

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Because of short stay of the client, the occupational therapists can mostly only do stage one, two and three completely of the in total seven stages. This ‘start’ will be a baseline for the future and administration, because the prospect is that a number of people with Parkinson’s disease will return to the hospital in de future. In this way the occupational therapy has a reference. 1. Name, Validate and Prioritise Occupational Performance Issues The occupational therapist meets the client a short time. Introduces herself and makes an appointment. The occupational therapist is getting some general information about the client. The occupational therapist takes off the COPM with the person with Parkinson’s disease. Or sometimes: makes a life-story analysis/ takes of a narrative interview. Or asks the question to the person: “Would you describe me a day out of your life?” This will depend on the client (reaction).

Current care of Clinical Question 1: COPM or an other narrative approach The occupational therapists are using, if possible, the COPM within the second contact with a new client with Parkinson’s disease. If there is an obvious difference in functional performance in the person’s on and of stage, they sometimes take of the COPM in both stages of the person with Parkinson’s disease. They use the COPM because they want to establish a client-centred way of the clinical process. Sometimes when the occupational therapists starts trying to follow the COPM with a person with Parkinson’s disease, it is possible they finish with a narrative frame of reference. The person’s story simply unfolds, and there is a challenge for the occupational therapists to let it totally unfold itself. It includes the person’s experiences, perceptions, and views of their everyday coping with Parkinson’s disease. The occupational therapists believe that “if this way of expression is being suppressed this will alter communication between the occupational therapist and the particular client; and opposite, letting the client’s story to be developed, it could enhance therapist – client partnership”. The occupational therapists think this way of working enhances a client-centred way of occupational therapy practice. The occupational therapists try to enable, enhance, and empower the person with Parkinson’s disease to change the “current life plot” in a positive experience. 2. Select Theoretical Approaches In the so-called silent stage the occupational therapist it depends on the interests of the client what the occupational therapist is doing during this stage. Sometimes the client wants to know more about the content of occupational therapy and the way of thinking about occupation and the treatment. For example: the therapist tells the client about client-centredness. The occupational therapists find it important that the occupational therapist is interested in the client. For example the cultural background, circumstances, environment etc… This stage can also be taken into consideration in a later stadium of the treatment. The occupational therapists find it important that there is space for this stage during this the whole process.

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Current Care of Discussion: Conceptual Model The occupational therapists use the Conceptual Model of the AMPS as a way of reasoning in their practice. They use this conceptual model nearly with every client. Also during the occupational therapy practice with people with Parkinson’s disease. The reason for this is mainly because they are more familiar with this conceptual model than for example with the Model Of Human Occupation (MOHO), the Canadian Model of Occupational Performance (CMOP) or the Person-Environment-Occupation (PEO) model. The occupational therapists use the Conceptual Model of the AMPS because it is a top-down client-centred way of reasoning and there can immediately be continued to stage three of the OPPM (Identify Performance Components and Environmental Conditions), when the occupational therapists use the assessment AMPS as an assessment tool. The occupational therapists say that the use of the Conceptual Model of the AMPS is not consciously, but frames the occupational therapy practice with people with Parkinson’s disease. The occupational therapists believe that it is important to have a way of reasoning about the client. They say that nowadays there is more evidence about using top-down reasoning as there is also evidence that it gives more satisfaction to both (client and therapist) and better functional outcome. The occupational therapists believe that everyone is reasoning in one way or the other and it is important to be aware of this reasoning. 3. Identify Performance Components and Environmental Conditions In this so-called assessment stage the occupational therapists use some assessments in the occupational therapy practice of the people with Parkinson’s disease to get information about different area’s of functioning. The occupational therapists use for example the assessment: Assessment of Motor and Process Skills (AMPS), LOTCA (Loewenstein Occupational Therapy Cognitive Assessment), Rivermead Behavioural Memory Test (RBMT), Jebsen Hand Function Test, Modified Fatigue Impact Scale (MFIS), and EuroQoL (EQ-5D). Which assessment(s) the occupational therapists will use during the practice will depend on the question and experienced problems of the client. Measurements and information of the Unified Parkinson Disease Rating Scale (UPDRS) assessed by the neurologist or the Parkinson’s disease specialized PD-nurse.

Current Care of Clinical Question 2: Assessment of Motor and Process Skills (AMPS) All the occupational therapists have followed the AMPS course, to be able to use the Assessment of Motor and Process Skills (AMPS) as an assessment tool in the occupational therapy practice. About the time that has to be taken to use the AMPS, they say the following: “It is worth using the AMPS as one get valuable results.” The department of occupational therapy has some equipment available to use the AMPS, but there is a lack of functional equipment and there is a problem with kitchen availability. The kitchen has to be shared with the nurses. There is also lack of quiet individual treatment room. At present the occupational therapists assess on the ward or in a room which sometimes is also occupied with other patients. The occupational therapists use the AMPS in regard to people with Parkinson’s disease in the clinical situation at least once during one admission of the person. When the person with Parkinson’s disease has clear on-off fluctuations, the AMPS is assessed in both stages, if possible. In this way the occupational therapists have a clear picture of the occupational performance and the possibility to give a treatment for both stages. Sometimes the AMPS is assessed for research purposes, that will depend on the content of the programme. The Final Project – January 2005 Maria de Boer and Fieke Wermers

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occupational therapists believe it is important to know about the quality of performance of the ADL, because of the four continua of performance: safety, efficiency, effort and independence.

Current Care of Clinical Question 3:

Parkinson’s disease Activity of Daily Living Scale (PADLS) The occupational therapists of the department neurology are not familiar with the Parkinson’s disease Activity of Daily Living Scale (PADLS). They want to know something about the satisfaction on the ADL and having a subjective view on the ADL from a person with Parkinson’s disease. The answer of the therapists on the question what they think is the importance of having a subjective view on the ADL of a person with Parkinson’s disease, is the following: “Clients’ views on their performance is getting more and more space in the overall health care programme. Especially with developing strong patients organisations around Europe. By using the COPM the occupational therapists already get some information about the functional performance in a subjective view of the client. Client’s view enhance client-centred way of occupational therapy practice.”

Current Care of Clinical Question 4:

Self-assessment Parkinson Disability Scale (SPDDS) The occupational therapists of the department neurology are not familiar with the Selfassessment Parkinson Disability Scale (SPDDS). The occupational therapists think it is valuable information to have a subjective view of impairment (and disability) in the home-environment of a person with Parkinson’s disease. At present the occupational therapists do not access the client in their home-environment. They try to get a clear picture about the home-environment and try to give suggestions for modifications for the home-environment during the contact with the client in the clinical setting. They find the main importance in the fact that the home-environment is the real-life situation.

Current Care of Clinical Question 5: Assessing cognition The occupational therapists use LOTCA (Loewenstein Occupational Therapy Cognitive Assessment) and the Rivermead Behavioural Memory Test to assess the cognition of the person with Parkinson’s disease. But they rarely assess the cognitive function itself. Most of the cognitive tests are performed by the neuropsychologists. To assess the cognitive problems that have an impact on the daily functioning they will use these already named occupational therapy specific assessments. The occupational therapists find it important to assess the cognition of a person with Parkinson’s disease when dementia is also present. There is a translation, but a poor validation of the Rivermead in Slovenia. Concerning the LOTCA, there is an unofficial translation and no validation of this assessment. The occupational therapists of the department Neurology use the English version of the LOTCA at present. The equipment of the assessments are available in the University Medical Center Ljubljana.

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Current Care of Clinical Question 6: Jebsen Hand Function Test The occupational therapists are using the standardized and validated Slovenian version of the Jebsen Hand Function Test for assessing the hand function of a person with Parkinson's disease. The reason the occupational therapists use this test is mostly for evaluating and follow-up. The most common hand function problems, they experience, are on the impairment level: tremor, bradikinesia (slowness of movement). The occupational therapists think it is important to assess hand-impairment in the initial and intermediate stage of the disease, as it has an obvious impact on hand functional performance, that means writing, eating, etc. When relevant, the occupational therapists take into account if the person with Parkinson’s disease is in on- or off-stage.

Current Care of Clinical Question 7: Modified Fatigue Impact Scale (MFIS) The occupational therapists are using the Modified Fatigue Impact Scale (MFIS) for assessing the fatigue of a person with Parkinson’s disease when a client is expressing fatigue as an important factor in everyday life functioning. The reason they use this scale is to get an objective description of the impact of fatigue an everyday life. The occupational therapists do not assess physical and mental fatigue separate. The occupational therapists take into consideration if the person with Parkinson’s disease is in on- or in off- stage when the client clearly expresses this by himself/herself.

Current Care of Clinical Question 8:

Unified Parkinson’s Disease Rating Scale (UPDRS) The occupational therapists are using the measurements and information of the Unified Parkinson’s Disease Rating Scale (UPDRS) collected by other disciplines. The occupational therapists use the measurements and information for research purposes. The occupational therapists do not experience any problems using the results of the UPDRS, because they get in contact with the neurologist or PD-nurse about the measurements and information when needed.

Current Care of Clinical Question 9: Parkinson’s Disease Questionnaire-39 (PDQ-39) The occupational therapists are identifying the factors that determine quality of life of a person with Parkinson’s disease mainly for research purposes. To assess quality of life they use the EuroQoL (EQ-5D). This assessment was used in Slovenia before with people with Parkinson’s disease and it showed positive results. However they mentioned, “it is not in line with ‘Damiano 11- QL criteria’. Those eleven quality of life criteria should be considered when describing quality of life with people with Parkinson’s disease.” Quality of life and well-being are the final aim of a rehabilitation programme. It is therefore sensible to measure these aspects. When the occupational therapists assessing the quality of life of a person with Parkinson’s disease they do not take into account if this person is in on- or in off- stage primarily. Not if the person does not explicitly described this issue by himself/herself. The occupational therapists mention, “quality of life applies to the life in general, not into some hours of the day”. When asking about the most common quality of life problems with people with Parkinson’s disease, the occupational therapists agree with the ‘Damiano classification’.

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4. Identify Strengths and Resources

Current Care of Clinical Question 10: Home-environment The occupational therapists do not go to visit the home-environment of the people with Parkinson’s disease during the occupational therapy practice. The Slovenian Health Care system does not make it possible to do visits at the home-environment of the people who get occupational therapy in the University Medical Centre Ljubljana. The occupational therapists ask in the clinical setting (among other things) about the material / physical environment. The occupational therapists try to get a clear picture of the homeenvironment (living room, kitchen, bathroom, bedroom, type of house (stairs or not), etc. This way there is made a situation sketch of the home-environment of the client. The occupational therapists also ask about the social environment: family and important others, caretakers, therapists. In Slovenia “meals on wheels” and nursing care can being provided at the people in the community. “meals on wheels” is for free in some parts of the country; nursing care is for free in the whole country. The occupational therapists think it is essential to do a home-visit during the occupational therapy practice of a person with Parkinson’s disease. There is also lack of community occupational therapists. Only two occupational therapists in Slovenia, under illegal conditions.

Current Care of Clinical Question 11: Caregiver The occupational therapists involve the caregiver of the client in to the practice when the caregiver is willing to participate. When there is a need to modify the environment or teach the compensatory strategies there is a need for involvement of important others, regarding to the occupational therapists. The occupational therapists have a positive experience when the caregiver is involved in the practice. The occupational therapists find the importance of involving the caregiver in the fact that this contributes to the quality of the occupational therapy intervention and the quality and wellbeing of the client. And possibly it will also ease the caregivers burden.

Current Care of Clinical Question 12: Multidisciplinary approach The occupational therapists work in a multidisciplinary team concerning the service of people with Parkinson’s disease. The professions in the multidisciplinary team are being named earlier in this chapter. There is a meeting of the multidisciplinary team every Thursday afternoon, but are not executed every week. This effectiveness of the multidisciplinary team depends partly on the presence of all team-members and the number of actual meetings. The last three months there have been two meetings. The occupational therapists find the importance of a multidisciplinary approach regarding to the people with Parkinson’s disease essential. Thinking about the future the occupational therapists suggest to have more active interaction between the team-members.

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5. Negotiate Targeted Outcomes and Develop Action Plans

Current Care of Clinical Question 13: Referral The people with Parkinson’s disease are usually referred to the occupational therapy in the stages three till five, regarding to the scale of Hoehn&Yahr. But there is an understanding between the occupational therapists and the neurologists towards earlier referral, stage one and two. The occupational therapists think that it is the best time to see a person with Parkinson’s disease when there is a need to intervene because of the change in functional performance. This is not predictable, they say. Regarding to the occupational therapists, the importance of a good timed referral is that it gives continuous support to the person with Parkinson’s disease. And it gives satisfaction to the occupational therapist that it can provide the occupational therapy service at it best to the person with Parkinson’s disease when needs arise. 6. Implement Plans Through Occupation

Current Care of Clinical Question 14: Cueing The occupational therapists are using cueing strategies when there is no other way to ‘startgoing’. The occupational therapists use visual and proprioceptive cueing strategies. The occupational therapists say that a person with Parkinson’s disease usually needs cues in the off-stage. By trial and error the occupational therapist, in conjunction with the physiotherapist, decides which strategy is most effective for each individual person with Parkinson’s disease. The occupational therapists mention, “cueing strategies are essential for people with Parkinson’s disease who have freezing while walking (to prevent falls)”. The occupational therapists say also that in advanced stage of Parkinson’s disease where there are clear on-off fluctuations, people with Parkinson’s disease in off- stage need a kind of external cue to start and continue the chosen ADL tasks. 7. Evaluate Occupational Performance Outcomes

Current Care of Clinical Question 15: Re-assessing COPM The occupational therapists are re-assessing the COPM with people with Parkinson’s disease at discharge, if applicable. The reason they re-assess the COPM is to evaluate the occupational therapy interventions or the effect of the drug treatment. They want to use the COPM to establish a client-centred way of her clinical process. Sometimes it is done in onand off- stage. The COPM is kept in the patient file and repeated when the patient is readmitted to the hospital, or sometimes followed-up as an outpatient. If the patient is readmitted to the occupational therapists sometimes the COPM could be re-assessed, if the person with Parkinson’s disease still agree with the occupational performance issues, but sometimes the COPM has to be done from the beginning, if there are new occupational performance issues.

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patients contact the occupational therapists by themselves. The occupational therapists believe that a follow-up of the occupational therapy treatment with people with Parkinson’s disease is important, to provide consistent occupational therapy service when patients have the need to. The people with Parkinson’s disease should have a clear picture of what the benefits of occupational therapy are. They should be encouraged to contact the department of occupational therapy when they will have a need for an occupational therapy intervention.

§ 7.7 Other relevant subjects In this paragraph there will be given some information about the supply of aids, about the new building and about the Parkinson’s Disease Society. These are relevant subjects concerning the care of people with Parkinson’s disease. Aids People with Parkinson’s disease can get simple aids in the so-called ‘Borrowing Shop’. This are shops that provide aids that are being paid by the Slovenian Health Insurance ZZZS. This simple aids include: a transport wheelchair, toilet raiser, bath seat, shower seat, etc. The person can borrow the aids for the period of need. The aids can be collected with a prescription form of the general practitioner. More specific or expensive aids and adjustments are being assessed by the occupational therapists and technicians in the Rehabilitation Centre in Ljubljana. The physicians and/or occupational therapists will decide if the particular aid / adjustment can be justified. Aids and adjustments can be re-assessed in the Rehabilitation Centre every three years and has a good service. General aids (for example: grab rails) and smaller aids (for example: adapted utensils and writing aids) have to be paid by the person his- or herself. New building In the future, in approximately two years, there is going to be a new building for the department Neurology. The occupational therapists hope that the new building enables the occupational therapy department to progress more in time. And that there will be more supplies for the occupational therapists. The occupational therapist would like to see an enlargement of the team up to eight occupational therapists all with on-going education, to be able to provide optimum care. The occupational therapists believe that on-going education is a basic for development and progress of each profession. Parkinson’s Disease Society Slovenia has set up a Parkinson’s Disease Society for the people with Parkinson’s disease. This society is established in 1989 by a neurologist of the University Medical Center Ljubljana. The president of the society and a few colleges are in charge of the organization and its activities. The president is also a member of the European Parkinson’s Disease Association (EPDA). The Parkinson’s Disease Society has four groups divided over the whole of Slovenia with in total 400 members. From this number, there are 300 patients and 100 caregivers. Every month they publish a journal, organize trips to different places and organize workshops given by disciplines as PD-nurse, occupational therapy, physiotherapy, speech therapy and psychiatrist. People are free to come and there are afternoons were people can meet each other in the apartment were the society is established.

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§ 7.8 References -

http://www.enothe.hva.nl/meet/ac99/ac99-min-eng.htm http://www.evd.nl/zoeken/showbouwsteen.asp?bstnum=88001 Health Care System in Slovenia – Klinični Center Ljubljana. (Information of the Klinični Center Ljubljana / resource and date: unknown) Word Health Organization Regional Office for Europe (1996). Health Care Systems in Transition – Slovenia (preliminary version). Copenhagen. World Health Organization Regional Office for Europe / European Commission (2001). Highlights on Health in Slovenia. Copenhagen.

Interviews: - (Ms. J. Janša, occupational therapist, department Neurology, Klinični Center Ljubljana, personal interview, December 2, 2004). - (Ms. T. Merzel and Ms. N. Tovornik, physiotherapists, department Neurology, Klinični Center Ljubljana, personal interview, November 23, 2004). - (Ms. L. Ocepek , Parkinson’s Disease-nurse specialist (PD-nurse), Klinični Center Ljubljana, personal interview, December 6, 2004). - (Dr. D.B. Pirtosek, neurologist, department Neurology, Klinični Center Ljubljana, personal interview, November 9, 2004). - (Dr. D. Vodusek, neurologist and manager of the division Neurology, Klinični Center Ljubljana, personal interview, November 17, 2004). - (Mr. B. Šmid, President of the Parkinson’s Disease Society, ‘Trepetlika’, Ljubljana, personal interview, November 24, 2004).

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CHAPTER 9: Determination of desired changes

§ 9.1 Introduction In this first step of the Implementation Cycle there will be given advises that are a result of the development of guidelines for good care (ideal care) compared with the description of the current care: the judgement of the actual care (actual care). In dialogue with the consultee of this project, the project group has adapted the advises in the interest of the applicability for the occupational therapy practice of the department Neurology in the University Medical Centre Ljubljana. The purpose of this chapter is to give the consultee concrete suggestions and recommendations, which have been established for the benefit of the quality of the occupational therapy practice of people with Parkinson’s disease. This chapter is divided in the seven stages of the Occupational Performance Process Model (OPPM). The advises are composed per clinical question.

§ 9.2 Stage 1: Name, Validate and Prioritise Occupational Performance Issues

Advises for Clinical Question 1:

COPM or an other narrative approach

Canadian Occupational Performance Measurement (COPM): -

The project group suggests, with those who have fluctuating Parkinson’s disease, the identification of issues must be scored separately for both the on- and off-stage (ensuring that all occupational performance issues, both in on- and off-stage, are scored). The project group suggests that the COPM is not considered to be useful for clients with one clear problem in the field of activity, since they have already indicated their goal. However, in clinical practice the scoring for performance and satisfaction for that particular problem can still be useful, since this reflects the perception of the client and offers the possibility to detect change from the client’s point of view.

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-

The project group suggests that an introduction of the COPM in a multidisciplinary team demands reconsideration of current clinical practice, since this can be in conflict with the principles of client-centred practice.

An other narrative approach: -

The project group suggests that to set goals that are individually relevant, therapists must collaborate with clients and understand their priorities. The project group suggests that differences between clients’ and occupational therapists’ construction of the story of the client, as a result from the narrative approach, must be recognized to allow for a productive therapeutic encounter.

§ 9.3 Stage 2: Select Theoretical Approaches

Advises for Discussion: -

Conceptual Model

The project group recommends that research has to be done to can give an advise about the use of any conceptual model in the occupational therapy practice. The project group suggests to orientate also on other conceptual models to be able to make a founded decision in which conceptual model is being used in the occupational therapy practice of people with Parkinson’s disease. The project group suggests to keep up-to-date concerning the articles (research) that are published, regarding to the use of conceptual models in the occupational therapy practice.

§ 9.4 Stage 3: Identify Performance Components and Environmental Conditions

Advises for Clinical Question 2: -

The project group recommends a quiet individual treatment room for the occupational therapist. The project group recommends that the equipment that is required to use the Assessment of Motor and Process Scale (AMPS) is available. The project group suggests, with those who have fluctuating Parkinson’s disease, the observation of the performance of ADL must be scored separately for both the on- and off-stage.

Advises for Clinical Question 3: -

Assessment of Motor and Process Skills (AMPS)

Parkinson’s disease Activity of Daily Living Scale (PADLS)

If the occupational therapists wants a specific Parkinson’s disease assessment tool to get a subjective view about (the satisfaction) on the ADL from a person with Parkinson’s disease the project group suggests that the Parkinson’s disease Activity of Daily Living Scale (PADLS) can be used.

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-

When the department of occupational therapy wants to use the PADLS, the project group suggests that the assessment-tool has to be translated in Slovene language and being validated in this form.

Advises for Clinical Question 4: -

-

If the occupational therapists wants a specific Parkinson’s disease assessment tool to get a subjective view of impairment (and disability) in the home-environment of a person with Parkinson’s disease the project group suggests that the Self-assessment Parkinson Disability Scale can be used. When the department of occupational therapy wants to use the SPDDS, the project group suggests that the assessment-tool has to be translated in Slovene language and being validated in this form.

Advises for Clinical Question 5: -

-

-

-

Jebsen Hand Function Test

The project group suggests, when using arm measures such as the Jebsen Hand Function Test, it is important to compare the affected with the unaffected hand. The project group suggests that an occupational therapist might question whether items in the Jebsen Hand Function Test are representative for the everyday tasks and whether the sub-tests that are included in the test actually represent the tasks of interest.

Advises for Clinical Question 7: -

Assessing cognition

The use of LOTCA and Rivermead is being suggests above the use of other assessments that assess the cognition of the person of Parkinson’s disease. The LOTCA and Rivermead are occupation specific and assess the cognitive problems that have an impact on the daily functioning. The other assessments assess the cognition, which is the task of the neuropsychologist in the University Medical Centre Ljubljana. The project group suggests further validation of the assessment The Rivermead Behavioural and Memory Test. The project group suggests official translation and validation of the assessment LOTCA.

Advises for Clinical Question 6: -

Self-assessment Parkinson Disability Scale (SPDDS)

Modified Fatigue Impact Scale (MFIS)

The project group suggests that assessing fatigue would be improved by including measures of more rigorously defined, quantifiable components of fatigue. The project group recommends to interpret the psychosocial subscale scores with caution, because of the limited value of this subscale.

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Advises for Clinical Question 8: -

The project group suggests that the important limitations of the UPDRS, that it is not a client-centered tool and does not account for the variability in the presentation of the disease, must be taken into consideration.

Advises for Clinical Question 9: -

-

Unified Parkinson’s Disease Rating Scale (UPDRS)

Parkinson’s Disease Questionnaire-39 (PDQ-39)

The project group suggests, in order to highlight particular areas of concern for people with Parkinson’s disease, it may be very helpful to include the disease-specific quality of life scale, Parkinson’s Disease Questionnaire-39 (PDQ-39), routinely for baseline and follow-up assessments. However, the project group recommends that the assessment PDQ-39 need to be further developed and also to be better determine the validity before it can be used during the occupational therapy practice with people with Parkinson’s disease in Slovenia.

§ 9.5 Stage 4: Identify Strengths and Resources

Advises for Clinical Question 10: -

The project group recommends to assess the home-environment of the person with Parkinson’s disease during the occupational therapy practice. The visit of the occupational therapist at the home-environment of the people with Parkinson’s disease can have different goals. First of all to inventory the physical environment and second goal can be treatment at home situation for optimum adaptation.

Advises for Clinical Question 11: -

-

Caregiver

If the caregiver is prepared to, the project group suggests that the caregiver of the person with Parkinson’s disease should be involved in the occupational therapy practice. There are indicators that the caregiver of the person with Parkinson’s disease sometimes also can be seen as a client of the occupational therapist. Therefore the project group suggests extra time and attention should be made. This will lead to a better adaptation process of the client and his or her social environment.

Advises for Clinical Question 12: -

Home-environment

Multidisciplinary approach

The project group recommends the professions should be discussing the composition of the multidisciplinary team regarding to the needs of the individual person (in this case a person with Parkinson’s disease). The project group recommends a more intensive multidisciplinary approach (frequency / different professions working together).

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§ 9.6 Stage 5: Negotiate Targeted Outcomes and Develop Action Plans

Advises for Clinical Question 13: -

Referral

The project group suggests that the person who is diagnosed with Parkinson’s disease should be clearly informed about the content of occupational therapy by an occupational therapist in an early stage. So when the person experiences change in occupational performance the person with Parkinson’s disease can make a decision to use the occupational therapy service.

§ 9.7 Stage 6: Implement Plans Through Occupation

Advises for Clinical Question 14: Cueing - The project group suggests that understanding the effect of cueing on activities of daily living of a person with Parkinson’s disease can helps occupational therapists decide when to use the cue. Further investigation about the effect of cueing is therefore required.

§ 9.8 Stage 7: Evaluate Occupational Performance Outcomes

Advises for Clinical Question 15: -

-

The project group suggests that after every treatment a short evaluation should be taken place. Within this evaluation must be examined which goals are reached at that moment, if the client is satisfied by that, if he/she wants to continue and if there are other problems the client experience in the daily functioning. The project group suggests that the caregiver is also present at the final conversation/evaluation, because it important to know how the practical application of the treatment goes in the home situation. The project group suggests that before concluding the treatment term, there should be written a final report. In the final report is described on which goals are worked, if possible the interventions that are used, and what the results are.

Advises for Clinical Question 16: -

-

Re-assessing COPM

Follow-up

The project group suggests to have a follow-up treatment for people with Parkinson’s disease, because the clients can have a need for occupational therapy in every stage. There is no clear final phase for the occupational therapy treatment with people with Parkinson’s disease, because at every stage other new disabilities appear that earlier were not present. The project group recommends further discussion into what form of follow-up care would be most effective for maintaining the health-related quality of life of people with Parkinson’s disease and for providing continuing support for their caregivers.

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Chapter 10: Analysis of sticking points regarding to change

§ 10.1 Introduction In the process of implement advises into the practice, insight in the sticking points of this implementation is very important (Grol, van Everdingen, & Casparie, 1994). The understanding of the possible causes of a problem, in our case the implementation of the advises, makes it considerably easier to develop effective implementation strategies. That is why we have made an analysis of the sticking points concerning all the advises we brought out to the (occupational therapists of the) department Neurology.

§ 10.2 Ishikawa Diagram The sticking points of the implementation of the advises lie in several areas. Given the diversity of the sticking points it is sensible to make a good analysis of this. To identify the sticking points of the implementation of the given advises we used a socalled Ishikawa diagram, also known as a Cause-and-Effect diagram, Fishbone diagram, and Root Cause Analysis. The first name is after the inventor of the tool, Kaoru Ishikawa (1969) who first used the technique in the sixty’s. In an Ishikawa diagram the possible causes of a problem are rubricated in a number of head groups. The basic concept in the diagram is that the name of a basic problem of interest is entered at the right of the diagram at the end of the main ‘bone’. The main possible causes of the problem (the effect) are drawn as bones off of the main backbone. Different names can be chosen to suit the problem at hand, or these general categories can be revised. The key is to have three to six main categories that encompass all possible influences. The next step is to add possible causes to the main ‘bones’ and more specific causes to the ‘bones’ on the main ‘bones’. The use of a Ishikawa diagram is mostly done in groups (brainstorming), but certainly possible done by individuals. When the fishbone is complete, one has a rather complete picture of all the possibilities about what could be the root cause for the designated problem (mot.vuse.vanderbilt.edu).

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personnel support

means lack of equipment lack of staff

lack of facilities lack of OT office space

lack of expanding knowledge

lack of quiet individual treatment room(s) lack of Slovene translated assessments1

time pressure lack of access to internet/journals

implementation of the advises lack of time to report

influence of members of MDT

not able to do home-visits medical purpose of admission of person

large influence prominent characters (general) short stay of person social environment

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§ 10.3 Sticking points The sticking points, concerning to the implementation of changes in this project, are identified for all the changes together. The changes in our project are the implementation of the advises that we have given to the occupational therapists of the department Neurology and the whole rehabilitation team of this department. That is why the ‘implementation of the advises’ is the head of the fish. We have chosen for one problem to make one Cause-and-Effect diagram, because the sticking points of all the advises strongly overlap and correspondent with each other. The sticking points are analysed within three head causes, namely: person, means, and organization. We think these causes will include the most important sticking points concerning the implementation of the given advises. 10.3.1 Sticking points concerning the personnel support The sticking points concerned the capacity of the staff of the department Neurology belong to the head cause ‘personnel support’. Many of the given advises ask for more staff, effort of the people involved (e.g. multidisciplinary) or an extra time investment of the people. When this time is not available at the present, it can be hard to implement the advises. Sticking points concerning the personnel support: • Lack of staff. If the work is done as advised, more occupational therapists in the department Neurology are necessary and pausible also of other disciplines of the multidisciplinary team; • Lack of expanding knowledge. For example: by attending courses, research, exchange information; A large part of this aspect has to do with the time and money that is available. Regarding to the occupational therapists, the attitude is there. • Time pressure. Especially in the occupational therapy treatment, there are a lot of clients, with a general short stay and only a few occupational therapists. More time per client is necessary to be able to work evidence-based; 10.3.2 Sticking points concerning the means The head cause ‘means’ contains sticking points are concerning all the material supplies of the department Neurology. Sometimes the advises we have brought out ask for certain supplies. Without these supplies the given advises cannot be implemented. Implementation of the advises mean an investment which cannot be carried out without this investment. Sticking points concerning the means: • Lack of equipment for the occupational therapy practice. For example: assessments, aids; • Lack of facilities. For example: adjusted kitchen, bathrooms and toilets; • Lack of occupational therapy office space. For example: for meetings, work visits, reporting treatments and teaching students; • Lack of quiet individual treatments room(s). For example: for assessing, observing and treating clients;

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•

•

Lack of Slovene translated and validated assessments. A few assessments are translated and validated in Slovene. This can be an obstacle for using other assessments; Lack of access to internet / journals. There is only one working computer available and only one of the occupational therapists has access to the library of the University Medical Centre Ljubljana. For other sources for publications the occupational therapists (and also others) have to go to other locations in Ljubljana. 10.3.3 Sticking points concerning the organization

The sticking points concerning the structure of the organization belong to the head cause ‘organization’. In a hospital of a scope as the University Medical Centre in Ljubljana it is possible that the nature of the organization can decide if in advise will be implemented or not. To what extent will managers degree with the advises, how will they communicate about their opinion with the people involved and to what extent will the monitoring of the compliance of the advises happen? Sticking points concerning the organization: • Lack of time to report. There are, especially in the department Occupational Therapy treatment, there are a lot of clients, with a general short stay and only a few occupational therapists; There is not enough time to report during dismissal of clients, write down a plan for treatment; • Not able to do home-visits. Occupational therapists are not allowed to visit clients at home. The reason for this lays in the Slovenian Health Care system; • Medical purpose of admission of person (on-off stages). Some people with Parkinson’s disease are in the hospital to change their medication. A lot of these admissions endure a drug-holiday and they will experience extreme off-stages. In this off-stages it is very difficult to treat the person as an occupational therapist. This stage, of a continue off-stage, of the person is not the actual situation the person with Parkinson’s disease is dealing with in daily living; • General short stay of persons (part of process). People with Parkinson’s disease are staying only a few weeks in the hospital. In this time it is almost impossible for the occupational therapist to fulfil their treatment program; 10.3.4 Sticking points concerning the social environment The sticking points concerning the ‘social environment’ of the department Neurology belong to this head cause. As a practitioner, one has to deal with other persons, who can have influence on the implementation of the changes: colleague practitioners on the one hand and clients on the other hand. Sticking points concerning the social environment: • Large influence of prominent characters. The prominent characters have a large influence on the way of working in the department Neurology. The management of the department has a lot of influence on the possibilities within the department occupational therapy (and the department Neurology as a whole); • Influence of members of multidisciplinary team. Regarding to our advises, a intensive multidisciplinary approach concerning the care of people with Parkinson’s disease is important. To implement the advice the occupational therapists are depended on the Final Project – January 2005 Maria de Boer and Fieke Wermers

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other members of the multidisciplinary team. The practitioners of the department Neurology act quit on their own, regarding to their practice.

§ 10.4 References -

Grol, R. T. P. M., Van Everdingen, J. J. E., & Casparie, A. F. (1994). Invoering van richtlijnen en veranderingen, een handleiding voor de medische, paramedische en verpleegkundige praktijk. Utrecht: De Tijdstroom. http://mot.vuse.vanderbilt.edu/mt322/Ishikawa.htm

Interviews: - (Ms. J. Janša, occupational therapist, department Neurology, Klinični Center Ljubljana, personal interview, December 2, 2004). - (Ms. T. Merzel and Ms. N. Tovornik, physiotherapists, department Neurology, Klinični Center Ljubljana, personal interview, November 23, 2004). - (Ms. L. Ocepek , Parkinson’s Disease-nurse specialist (PD-nurse), Klinični Center Ljubljana, personal interview, December 6, 2004). - (Dr. D.B. Pirtosek, neurologist, department Neurology, Klinični Center Ljubljana, personal interview, November 9, 2004). - (Dr. D. Vodusek, neurologist and manager of the division Neurology, Klinični Center Ljubljana, personal interview, November 17, 2004).

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CHAPTER 11:

Develop plans, adopt change and evaluate

§ 11.1 Introduction This chapter contents the last three steps of the Implementation Cycle (as a part of the Quality Cycle) of the model of Grol (1994). The last three steps are: - Development of strategies/plans for adoption change - Adoption of the change and the organization of this - Follow up: evaluation of the result We did not pass through these last three steps of the Quality Cycle in this project. Nevertheless, in this chapter we want to give the occupational therapists of the department Neurology of the University Medical Centre Ljubljana some suggestions for a direction to complete the Quality Cycle by passing through these last three steps. A large part of this chapter is quit theoretical. This information given, is an assistance for ‘finishing’ the Quality Cycle. Regarding to the project we want to write something about possible evaluation of the implementation of the advises that are given. To guarantee a successful import of a new working method attention to the implementation of it is very important (Grol, van Everdingen & Casparie, 1994).

§ 11.2 Development of strategies / plans for adoption change From theory in the field of the implementation of divergent innovations comes forward that this concerns a step by step process, in which knowledge, attitude, skills, behaviour ruts and structural and organisational factors all get attention. The following steps are possible, globally seen, distinguished: •

Orientation - Be informed: First of all practitioners or health care institutions must be faced with the changes. The circulation must be, that as many people and organisations, (from the target group), as possible can come into contact with the changes.

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-

•

•

•

Interest and involvement: The new working methods must be presented in such a way that practitioner and other people become interested and get the feeling: ‘This is interesting, I want to know more about this.’ The strategy must such be so that one gets rapidly a feeling of involvement: ‘This has to do with me and my work.’ Insight - Understanding: The manner of circulation and implementation must be in such a way that the practitioner or the institution knows exactly what implies the new working method and what is expected to new actions. - Insight in the own working method: One also must have a good insight in its own care attribution and on which points a deviation to the new proposals exists. Acceptance - Positive attitude: The practitioner or the institution must be put in the occasion to weight the advantages and disadvantages of the new working method and to get persuaded that these are valuable, effective or useful, saving in time, etc. - Change-inclined-driven: In association with a positive attitude with respect to the new working method, also a clear intention must arise to do it really different. One must have a good view about the advises and working method could be applied. The feeling must grow that it is possible to apply it in its own setting or institution. Change - Implementation in practice: There must be a possibility to try out the new working method, to get experienced with it, to learn the required skills and to realise practical or organisational adaptations. The practitioner and people in his or her surrounding must experience that it will work and that it will be possible to work according the new proposals/advises. - Conservation of change: Finally the new working method will be fitted structurally in the existing behaviour of a practitioner, a practice, a department or an institution. It must be occurred that one falls back in old behaviour or forget the directives or procedures.

Per step of the process that is described one can examine which sticking points there are, which interventions can thereby be effective and what the impact has been. The activities within the framework of this step by step process, aim on the one hand on an effective distribution and on the other hand on actual going and continuing of the apply of the given advises and new working methods in daily practice (Grol, et al., 1994).

§ 11.3 Adoption of the change and the organization of this After the strategies and interventions to realise change has been selected, the actual implementation of the given advises, new working methods or improvement of the care follows. Since it concerns in most of the cases complex changes, where divergent obstructions are playing a role, a good plan have has to be established and the implementation of the change must be well organised. The following matters are thereby important: -

In most of the cases a combination of interventions, coordinated on the different sticking points, is most effective; Activities at several levels (centrally and locally, this means on practice -, department - and individual level) are necessary;

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-

Change is a step by step process (see § 10.2); one must continuously examine in which step of the change process one is and if the previous steps have been taken successfully; For effective changes certain conditions must be realised: an open attitude of all the involved people with respect to the improvements in the care, a culture which stimulates changes, involvement of all the practitioners who will get the changes? and a clear stimulant and support for improving the work from the ‘leaders’ of an institution or group. Introducing changes and new working methods is in fact a component of an ongoing process of quality improvement or of the ‘integrated quality care’ which one pursues (quality assurance) (Grol, et al., 1994).

§ 11.4 Follow up: evaluation of the result The last step in the process of implement the given advises and changes in practice concerns the evaluation of the whole process. Ideally the process is continuously followed critically and, between or afterwards, steered. The evaluation of the development, distribution and implementation of the advises can concern the following aspects: •

•

Process evaluation: the actual implementation activities in this area are mapped continuously, as a result of which one can note if the aimed actions, interventions and programmes have been indeed implemented (like the intention). Moreover, this evaluation gives insight in the interim problems, which are produces, so that changes in the treatment can be introduced. Effect evaluation: this evaluation has been aimed at examining if the objects in view of the changes are obtained. The impact evaluation implies: - Evaluation of the impact of the distribution of the renewal: is the target group reached? Are they interested? Are they accepting the changes? - Evaluation of the application of the new working method: are they working in practice according the given advises? Is the new technique or procedure indeed well applied? - Evaluation of long-term-effects: are the aims in the care reached with the new introduced advises/working methods? Are clients satisfied after application of it? Is cost saving realised and is working more efficient know? (Grol, et al., 1994)

One can evaluate step by step during the whole process of the development and implementation of the given advises and new working method. There are all kinds of methods available with which one can evaluate the actual application of the given advises and new working method. Some of these evaluation methods are: - Registration of oneself - Inspection of the status or the patient card - Observation in the practice or institution - Video - or audio recordings - Questionnaires/interview with practitioners - Patient surveys/interviews - Data from registration (Grol, et al., 1994).

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Suggestion for evaluation: To evaluate, when the given advises are implemented in daily practice, the occupational therapists of the department Neurology of the University Medical Centre Ljubljana can formulate (measurable) criteria extracted from the given advises. This way of evaluation is a registration of the occupational therapists themselves by using criteria the occupational therapists drawn up themselves. Of course, also other methods of evaluation are possible. The aspects of evaluation can also be distinguished in the three aspects of care, regarding to Donabedian (1982): namely, structure-, process- and outcome-aspects.

§ 11.5 References -

Donebadian, A. (1982). Explorations in Quality Assessment and Monitoring. Vol II. The Criteria and Standards of Quality. Michigan: Ann Arbor, Health Administration Press. Grol, R. T. P. M., Everdingen, van , J. J. E, & Casparie, A. F. (1994). Invoering van richtlijnen en veranderingen, Een handleiding voor de medische, paramedische en verpleegkundige praktijk. Utrecht: De Tijdstroom.

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150. Oliveira, R. M., Gurd, J. M., Nixon, P., Marshall, J. C., & Passingham R. E. (1997). Micrographia in Parkinson's disease: the effect of providing external cues. Journal of Neurology, Neurosurgery, and Psychiatry, 63, 429-433. 151. O’Reilly, F., Finnan, F., Allwright, S., Smith, D. G., & Shlomo, B. Y. (1996). The effects of caring for a spouse with Parkinson's disease on social, psychological and physical well-being. British Journal of Gen. Practice. 46(410), 507-512 (abstract) 152. http://ot.curtin.edu.au/home/html/ebp/Default.html 153. http://www.ot.utoronto.ca/fw_evaluation_Case.asp 154. Patti, F., Reggio, A., Nicoletti, F., Sellaroli, T., Deinite, G., & Nicoletti, Fr. (1996). Effects of rehabilitation therapy on Parkinsonian’s disability and functional independence. Journal of Neurological rehabilitation. 10, 223-231. 155. Pardessus, V., Puiseiux, F., Di Pompeo, C., Gaudefroy, C., Thevenon, A., & Dewailly, P. (2002). Benefits of home visits for falls and autonomy in the elderly: a randomized trial study. American Journal of Physical Medicine & Rehabilitation. 81(4), 247-252. 156. Park S., Fisher A. G., & Velozo C. A. (1994). Using the assessment of motor and process skills to compare occupational performance between clinic and home settings. American Journal of Occupational Therapy. 48(8), 697-709. 157. Peloquin, S. M. (1993). The depersonalization of patients : A profile gleaned from narratives. American Journal of Occupational Therapy, 47, 830-837. 158. Peto, V., Jenkinson, C., & Fitzpatrick R. (1998). PDQ-39: a review of the development, validation and application of a Parkinson's disease quality of life questionnaire and its associated measures. Journal Neurology, 245, 10-14. 159. Pirsig, R. (1991). Zen en de kunst van het motoronderhoud (17e druk). Amsterdam: Bakker. 160. Playford, E. D. (2003). Multidisciplinary rehabilitation for people with Parkinson's disease, editorial commentary. Journal of Neurology, Neurolsurgery and Psychiatry. 74(2), 148-149. 161. Pollock, N. (1993). Client-centered assessment. American Journal of Occupational Therapy, 47, 298-301. 162. Ramaker, C., Marinus, J., Stiggelbout, A. M., & van Hilten, B. J. (2002). Systematic evaluation of rating scales for impairment and disability in Parkinson's disease. Movement Disorders, 17, 867-876. 163. Reed , K. L. (1984). Models of practice in occupational therapy. Baltimore (MD): Williams & Wilkins. 164. Reed, K. L. & Sanderson, S. N. (1992). Concepts of occupational therapy. (3rd ed.) Baltimore (MD): Williams & Wilkins. 165. http://www.rescueproject.org/overview 166. Richards, M., Marder, K., Cote, L., & Mayeux, R. (1994). Interrater reliability of the Unified Parkinson’s Disease Rating Scale motor examination. Movement Disorders, 9, 89-91. 167. Robinson, C. (1993). Managing life with a chronic condition: The story of normalization. Qualitative Health Research, 3, 6-28. 168. Rosenberg, W., & Donald, A. (1995). Evidence-based medicine: an approach to clinical problem-solving. British Medical Journal, 310, 1122-1126. 169. Sackett, D. L., Richardson, W. S., Rosenberg, W., & Haynes, R. B. (1997). Evidencebased medicine: How to practice and teach EBM. New York: Churchill Livingstone. 170. Sackett, D. L., Rosenberg, W. M. C., Gray, J. A. M., Haynes, R. B., & Richardson, W. S. (1996). Evidence-based medicine: what it is and what it isn’t. British Medical Journal, 312, 71-72. Final Project – January 2005 Maria de Boer and Fieke Wermers

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171. Schrag, A., Selai, C., Jahanshahi, M., & Quinn, N. P. (2000). The EQ-5D - a generic quality of life measure-is a useful instrument to measure quality of life in patients with Parkinson's disease. Journal of Neurology Neurosurgery and Psychiatry, 69, 67-73. 172. Schrag, A., Jahanshahi, M., & Quinn, N. (2000). What contributes to quality of life in patients with Parkinson's disease?. Journal of Neurology Neurosurgery and Psychiatry 69, 308-312. 173. Schultz-Krohn, B., Foti, D., & Glogoski, C. (2001). Degenerative disease of the central nervous system. In: L. W. Pedretti & M. B. Early. Occupational Therapy practice skills for physical dysfunction (5th edition). St. Louis: Mosby. 174. Schwartz, K. B. ((1991). Clinical reasoning and new ideas on intelligence: Implications for teaching and learning. American Journal of Occupational Therapy, 45, 1033-1037. 175. Schwid, S. R., Covington, M., Segal, B. M., & Goodman, A. D. (2002). Fatigue in multiple sclerosis: Current understanding and future directions Steven. Journal of Rehabilitation Research and Development, 39, 211-224. 176. Shin, J. H., Haynes, R. B., & Johnston, M. E. (1993). Effect of problem-based, selfdirected undergraduate education on life-long learning. Canadian Medical Association Journal, 148, 969-976. 177. Siderowf, A., McDermott, M., Kieburtz, K., Blindauer, K., Plumb, S., Shoulson, I., & the Parkinson Group. (2002). Test-Retest Reliability of the Unified Parkinson’s Disease Rating Scale in Patients with Early Parkinson’s Disease: Results from a Multicenter Clinical Trial. Movement Disorders, 17, 758-763. 178. Simmons, D. C., Blesedell-Crepeau, E., & Prudhomme-White B. (2000). The Predictive Power of Narrative Data in Occupational Therapy Evaluation. The American Journal of Occupational Therapy, 54, 471-476. 179. Spencer, J. C., Davidson, H. A. & White, V. K. (1996). Continuity and change: past experience as adaptive repertoire in occupational adaptation. The American Journal of Occupational Therapy, 50, 526-534. 180. Stanton, S., Thompson-Franson, T., & Kramer, C. (1997). Linking Concepts to a process for Working With Clients. In Townsend, E (Ed.), Enabling Occupation: An Occupational Therapy Perspective (pp 56-94). Ottowa: Canadian Association of Occupational Therapists Publications. 181. Sumsion, T. (1999). The client-centred approach. In T. Sumsion (Ed.), Client-Centred Practice in Occupational Therapy (pp. 15-20). Edinburgh: Churchill Livingstone. 182. Suteerawattananon, M., Morris, G. S., Etnyre, B. R., Jankovic, J., & Protas, E.J. (2004). Effects of visual and auditory cues on gait in individuals with Parkinson's disease. Journal of the Neurological Sciences, 15, 63-69. 183. Taylor, M. C. (2000). Evidence-Based Practice for Occupational Therapists. London: Blackwell Science. 184. Thomas, C. (1998). Procesmodellen in de ergotherapie. In A. Kinébanian & C. Thomas (Ed.), Grondslagen van de ergotherapie. Maarssen: Elsevier/De Tijdstroom. 185. 1Tickle-Degnen, L. (1999). Organising, evaluating and using evidence in occupational therapy practice. American Journal of Occupational Therapy. 53(5), 537-539. 186. 2Tickle-Degnen, L. (1999). Gathering Current Research Evidence To Enhance Clinical Reasoning. American Journal of Occupational Therapy, 54, 102-105. 187. Timmermans, J. E., Sluijs, E. M., Dekker, J., & den Hartog, W. (1994). Kwaliteitsbeleid Paramedische Beroepen. Utrecht: CBO/NIVEL. 188. Trend, P., Kaye, J., Gage, H., Owen, C., & Wade, D. (2002). Short-term effectiveness of intensive multidisciplinary rehabilitation for people with Parkinson's disease and their carers. Clinical Rehabilitation. 16(7), 717-725. Final Project – January 2005 Maria de Boer and Fieke Wermers

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189. Trombley, C. (1993). Anticipating the future: Assessment of occupational function. American Journal of Occupational Therapy. 47(3), 253-257. 190. Trombley, C. A., & Radomski, M. V. (2002). Occupational Therapy for Physical Dysfunction. Baltimore: Williams & Wilkins. 191. Trombly, C. A., Radomski, M. V., & Davis, E. S. (1998). Achievement of self-identified goals by adults with traumatic brain injury: Phase I. American Journal of Occupational Therapy, 52, 810-818. 192. Trombly, C. A., Radomski, M. V., Trexel, C., & Burnet-Smith, S. E. (2002). Occupational therapy and achievement of self-identified goals by adults with traumatic brain injury: Phase II. American Journal of Occupational Therapy,56, 489-498. 193. Van Hilten, J., van der Zwan, A., Zwinderman, A., & Roos, R. (1994). Rating impairment and disability in Parkinson’s diseases: Evaluation of the Unified Parkinson’s Disease Rating Scale. Movement Disorders, 9, 84-91. 194. Visser-Meily, Drs, A., & Heugten, Dr, van, C. (2004). Zorg voor de mantelzorg. Den Haag: Nederlandse Hartstichting. 195. Wade, D. T., Gage, H., Owen, C., Trend, P., Grossmith, C., & Kaye, J. (2003). Multidisciplinary rehabilitation for people with Parkinson’s disease: a randomised controlled study. Journal of Neurology, Neurolsurgery and Psychiatry. 74(2), 158-162. 196. Weinsstock-Zlotnick, G., & Hinojosa, J. (2004). Bottum-Up or Top-Down Evaluation: Is one Better than the other? American Journal of Occupational Therapy. 58(5), 594-599. 197. Webster, D. (1968). Clinical Analysis of the disability in Parkinson’s disease. Modern Treatment, 5, 257-282. 198. White, M., & Epston, D. (1990). Narrative means to therapeutic ends. New York: Norton. 199. http://www.who.int/reproductive health/family_planning/docs/background_paper.doc 200. Wilson, B., Cockburn, J., Baddeley, A., & Hiorns, R. (1989). The development and validation of a test battery for detecting and monitoring everyday memory problems. Journal of Clinical Exp. Neuropsychology. 11(6), 855-870. (abstract) 201. WOK, NHG, & LHV (1994). Pakket voor deskundigheidsbevordering. Kwaliteitsbevordering. 27. Utrecht: NHG. 202. Wood, W. (1998). It is jump time for occupational therapy. American Journal of Occupational Therapy, 52,403-410. 203. World Health Organization (1980). International Classification of Impairments, Disabilities and Handicaps. Geneva: World Health Organization. 204. Word Health Organization Regional Office for Europe (1996). Health Care Systems in Transition – Slovenia (preliminary version). Copenhagen. 205. World Health Organization Regional Office for Europe / European Commission (2001). Highlights on Health in Slovenia. Copenhagen. 206. Wressle, E., Samuelsson, K., & Henriksson, C. (1999). Responsiveness of the Swedish version of the Canadian Occupational Performance Measure. Scandinavian Journal of Occupational Therapy, 6, 84-89. 207. Wressle, E., Marcusson, J., & Henriksson, C. (2002). Clinical utility of the Canadian Occupational Performance Measure- Swedish version. Canadian Journal of Occupational Therapy, 69, 40-48. 208. http://www.xs4all.nl/~mvijn/amps/AMPSinserviceNL.ppt

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ABBREVIATIONS ADL AMPS CAMCOG CAOT CFS CMOP COPM CRA CSI CVA DNHW EBP EDSS EPDA EQ-5D FIS GDP HRQoL H&Y IADL LNNB-M LOT LOTCA MEANS MFIS MMSE MOHO MS MSc NVE OPPM PADLS PD PD-nurse PDQ-39 PDS PEO-model PICO

Activities of Daily Living Assessment of Motor and Process Skills Cambridge Cognitive Examination Canadian Association of Occupational Therapy Chronic Fatigue Syndrome Canadian Model of Occupational Performance Canadian Occupational Performance Measurement Caregiver Reaction Assessment Caregiver Strain index Cerebrovasculair accident Department of National Health and Welfare Evidence-Based Practice Expanded Disability Status Scale European Parkinson’s Disease Association EuroQoL Fatigue Impact Scale Gross Domestic Product Health Related Quality of Life Hoehn&Yahr (stages of Parkinson’s disease) Instrumental Activities of Daily Living Luria Nebraska Neuropsychological Battery Memory Scale (Dutch association of caregivers) Loewenstein Occupational Therapy Cognitive Assessment Middlesex Elderly Assessment of Mental State Modified Fatigue Impact Scale Mini Mental State Examination Model Of Human Occupation Multiple Sclerosis Master of Science Nederlandse Vereniging van Ergotherapie Occupational Performance Process Model Parkinson’s disease Activity of Daily Living Scale Parkinson’s Disease specialized in Parkinson’s Disease-nurse Parkinson’s Disease Questionnaire-39 Parkinson’s Disease Society Person-Environment-Occupation model Elements of the clinical question (Person/Problem, Intervention, Cointervention, Outcome) PNF course Proprioceptive Neuromuscular Function course QoL Quality of Life RBMT Rivermead Behavioural Memory Test SCOPA-COG SCales for Outcomes in PArkinson’s disease- COGnition SCQ Sense or Competence Questionnaire SPDDS Self-assessment Parkinson Disability Scale SPES Short Parkinson’s Evaluation Scale Final Project – January 2005 Maria de Boer and Fieke Wermers

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UMC UPDRS WHO WMS-R ZZZS

Universitair Medisch Centrum Unified Parkinson Disease Rating Scale World Health Organization WMS-R Zavod Za Zdravstveno Zavarovanje Slovenije (Health Insurance Institute of Slovenia)

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APPENDIX A:

Assessments

Introduction In this appendix we want to give per assessment (the assessments we have mentioned in our literature research) some information about the content of the assessment. The reason for this additionally information is that we want the reader to understand the assessments we are discussing about in the literature research. In this way we hope that the reader can follow the process and the content in the discussion. Some of the assessments are already used in the occupational therapy practice for people with Parkinson’s disease in the University Medical Centre. Others are new for the occupational therapists as well.

Canadian Occupational Performance Measure (COPM) The Canadian Occupational Performance Measure (COPM) (developed by DNHW & CAOT, 1990) is an individualized outcome measure that is “client-centred and incorporates role and role expectations within the client’s own environment”. The COPM was developed from the Canadian Model of Occupational Performance and measures performance in the areas of selfcare, productivity and leisure. Occupational performance refers to the performance of activities and tasks of everyday life. The COPM uses a semi-structured interview to enable the individual to identify areas of difficulty in occupational performance. The first phase includes problem identification by client. Each problem is rated on a scale from 1 (not important) to 10 (very important). Next, the client chooses up to five of their most important identified problem areas. For each of the five problems, clients score their current level of performance and their satisfaction with that performance on scales of 1 (unable to perform, no satisfied) to 10 (able to perform, extremely satisfied). Scores are totalled for both performance and satisfaction and averaged over the five problem areas of concern and rate their performance and satisfaction. The initial and reassessment scores are then compared and evaluated for change. (Donnelly & Carswell, 2002)

Assessment of Motor and Process Skills (AMPS) The Assessment of Motor and Process Skills (AMPS) is an innovative observational assessment that is used to measure the quality of a person’s performance of domestic (instrumental) or basic (personal) activities of daily living (ADL). The quality of the person’s ADL performance is assessed by rating the effort, efficiency, safety, and independence of 16 ADL motor and 20 ADL process skill items. The ADL motor and ADL process skill are analogous to the goal-directed actions defined under the Activities and Participation domains of the International Classification of Functioning, Disability and Health (World Health Organization (WHO, 2001), and are thus the small units of performance that when carried out, one by one, result in the overall task being completed. More specifically, within the context of performing chosen, familiar, and life-relevant ADL tasks: Final Project – January 2005 Maria de Boer and Fieke Wermers

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• •

ADL motor skills are test items used to rate the level of skill observed when one moves oneself or task objects. ADL process skills are test items used to rate the level of skill observed when one (a) selects, interacts with, and uses tools and materials, (b) carries out individual actions and steps, and (c) modifies performance when problems are encountered.

The AMPS is a test of skill in occupational performance. It is important to note that the AMPS is not designed to be used to evaluate for the presence of neuromuscular, biomechanical, cognitive, or psychosocial impairments (e.g., strength, range of motion, memory), nor is it designed to be used to evaluate underlying capacities (e.g., ability to grip, ability to remember, ability to plan a course of action). Unlike impairments and underlying capacities, the ADL motor and ADL process skills of the AMPS are goal-directed actions enacted in the context of occupational performance. This means that the AMPS is used to assess activities and participation, not body function or contextual factors (WHO, 2001). The results of the AMPS can be used to answer four questions. 1. Why does this person experience difficulty? 2. What level of task challenge can this person manage? 3. Is this person a candidate for restorative interventions based on the use of restorative occupation or compensatory interventions based on the use of adaptive occupation? 4. Has this person’s ADL performance improved as a result of our interventions? An AMPS observation involves having each person evaluated perform two or three IADL tasks (e.g., pouring a glass of juice; making a bed; preparing eggs, toast, and coffee; vacuuming the floor; ironing a shirt) that the person has had prior experience performing. From among a subset of culturally-relevant and appropriately challenging tasks, the person chooses which tasks to perform (www.ampsintl.com).

Parkinson’s disease Activities of Daily Living Scale (PADLS) The PADLS (Hobson, Edwards, & Meara, 2001) allows patients to subjectively report the impact that Parkinson’s disease has upon their daily activities and will complement existing formal clinical measures in Parkinson’s disease. The PADLS is a self-report scale for the assessment of activities of daily living in Parkinson's disease. The PADLS is a five level scale, each level with a description and where the person with Parkinson’s disease has to state how he or she feels that the Parkinson’s disease affected the day-to-day activities in the last month, in accordance with a level (Hobson, Edwards, & Meara, 2001).

Self-rating Parkinson’s Disease Disability Scale (SPDDS) The SPDDS is a unidimensional instrument measuring disabilities in Parkinson’s disease patients living at home. The SPDDS is a disease-specific questionnaire that consists of twenty-four items addressing activities of daily living. The client indicates to what extent they are able to perform the activities without help. The answers are rated on a five-point scale ranging from ‘able to do alone without difficulty’ to ‘unable to do it all’ (Biemans, Dekker, & van der Woude, 2001). Final Project – January 2005 Maria de Boer and Fieke Wermers

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The SPDDS is said to be the most accurate type of measure of disability (self-rated) for Parkinson’s disease (Stallibrass, Sissons, & Chalmers, 2002).

LOTCA (Loewenstein Occupational Therapy Cognition Assessment) The Loewenstein Occupational Therapy Cognitive Assessment (LOTCA) was developed by the staff members of the Occupational Therapy Department at Loewenstein Rehabilitation Hospital (LRH) in Israel for the purpose of evaluating basic cognitive abilities in brain injured clients. Basic cognitive functions are thought to be prerequisite for managing every day encounters with the environment. The LOTCA is now divided into six main areas: 1. Orientation 2. Visual Perception 3. Spatial Perception 4. Motor Praxis 5. Visuomotor Organization and 6. Thinking Operations. The battery contains 26 sub-tests, including the Riska Object Classification (ROC), (Williams Riska & Allen, 1985), which was added to enhance the evaluation of the categorization operation. Although the LOTCA was originally developed for clients with brain damage (traumatic brain injured, stroke and brain tumors), because of it’s usefulness it is suitable also for assessment in other populations where cognitive status has to be established (spinal cord injured, degenerative and psychiatric diseases and underachieving students).

Rivermead Behavioural Memory Test (RBMT) The Rivermead behavioural memory test (henceforth RBMT) was developed to detect impairment of everyday memory functioning and to monitor change following treatment for memory difficulties. It has been designed to assist clinical psychologists, occupational therapists, speech therapists and others who work with memory impaired people. The test attempts to bridge the gap between laboratory-based measures of memory and assessments obtained by observation and questionnaire. It aims to provide analogues of everyday memory situations that appear t prove troublesome for certain patients with acquired brain-damage. The sub-tests were chosen on the basis of the memory difficulties reported by subjects in a study of memory problems in head-injured patients (Sunderland, et al., 1983), and through observations of patients at Rivermead Rehabilitation Centre, Oxford, England. The items involve either remembering to carry out some everyday task, or retaining the type of information needed for adequate everyday functioning. The fact that there are four parallel versions of the RBMT means that practice effects due to repeated testing with the same test can be avoided. The RBMT fulfils the practical requirements of a psychological test: it is short, easy to understand, to use and to interpret. Furthermore. It is applicable to a wide range of environmental settings. Final Project – January 2005 Maria de Boer and Fieke Wermers

Theoretical Background Report

SCOPA-COG (SCale for Outcomes in PArkinson’s disease – COGnition) The SCOPA scale The departments of neurology and medical decision making of the Leiden University Medical Center are involved in a research project on clinimetrics in Parkinson’s disease (PD). This project started in July 1999 and is called: ‘The assessment of the disablement process in Parkinson’s disease’. The project is based on the framework of the ‘disablement process’ that follows a pathway that links impairments to disability and various other outcomes, such as patients' perspectives on health. Extra- and intra-individual factors and comorbidity may act upon this pathway and modify the course of the disease. The objective of the first phase is to construct a multi-modular rating scale, the SCOPA (SCale for Outcomes in PArkinson’s disease). Both scale and modules should meet several demands, viz. they must be easy to use in a clinical setting, take little time to complete, and have a sound clinimetric basis (reliable, valid and responsive). On the impairment level modules addressing the following domains will be constructed or selected from existing instruments: cognition, mood, psychiatric dysfunction, motor evaluation, motor complications, and autonomic dysfunction. On the disability level modules on psychosocial disability, activities of daily living, and sleep will be developed. Other modules will address comorbidity and cost (www.lumc.nl). The SCOPA-COG The SCOPA-COG is an assessment of the cognition in Parkinson’s disease. In the SCOPACOG, there is used a functional classification and discerned the following cognitive domains: attention, memory and learning, executive functions, visuospatial functions, verbal functions, and thinking and reasoning. The assessment is intended as an index of severity and may be used to compare groups in research situation, and it was not intended to construct a screening tool or a diagnostic instrument. The SCOPA-COG (SCales for Outcomes of PArkinson’s disease–cognition), consists of 10 items with a maximum score of 43, with higher scores reflecting better performance (Marinus, Visser, Verwey, Verhey, Middelkoop, Stiggelhout, & van Hilten, 2003).

MMSE (Mini Mental State Exam) The Mini Mental State Examination (MMSE) (developed by Folstein, Folstein, & McHugh, 1975) is a widely used method for assessing cognitive mental status. The evaluation of cognitive functioning is important in clinical settings because of the recognized high prevalence of cognitive impairment in medical patients. As a clinical instrument, the MMSE has been used to detect impairment, follow the course of an illness, and monitor response to treatment. The MMSE has also been used as a research tool to screen for cognitive disorders in epidemiological studies and follow cognitive changes in clinical trials. While the MMSE has limited specificity with respect to individual clinical syndromes, it represents a brief, standardized method by which to grade cognitive mental status. It assesses orientation, attention, immediate and short-term recall, language, and the ability to follow simple verbal and written commands. Furthermore, it provides a total score that places the individual on a scale of cognitive function (www.nemc.org).

Final Project – January 2005 Maria de Boer and Fieke Wermers

Theoretical Background Report

Middlesex Elderly Assessment of Mental State (MEAMS) The Middlesex Elderly Assessment of Mental State (MEAMS) (developed by Golding, 1989) has become the benchmark screening test to detect gross impairment of specific cognitive skills in elderly people. It is designed to assist assessors to differentiate between functional illnesses and organically based cognitive impairments. The test items are sensitive to the functioning of different areas of the brain, each responsible for a different mental capacity. In short, the MEAMS will not tell you how intelligent a person is, but will tell you whether there is reason to suspect that parts of the brain are working less efficiently than they should, and consequently whether or not it is necessary to recommend that the subject be investigated more thoroughly. Unlike a number of simple screening tests, for example, those intended to detect dementia, the MEAMS systematically surveys the major areas of cognitive performance using a comprehensive range of subtests. The test is simple to administer and score, and can be completed in approximately ten minutes. It includes two parallel versions to allow for repeated testing. The 12 subtests cover the following areas of functioning: -

orientation memory new learning naming comprehension

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artihmetic visuo-spatial skills perception fluency motor preservation

(www.hartcourt-uk.com)

Cambridge Cognitive Examination (CAMCOG) The CAMCOG is the cognitive section of the Cambridge Examination for Mental Disorders of the Elderly (CAMDEX). The Cambridge Cognitive Examination (CAMCOG) was designed for the general elderly population to assess cognitive impairments characteristic of dementia. CAMCOG yields a total score as well as separate scores on seven subscales. The Cambridge Examination for Mental Disorders of the Elderly (CAMCOG) only uses the numerical test. Language – naming a pencil and watch may be too easy to detect nominal aphasia and should be followed by questions about less common names (e.g. a watch face or hands). Repetition of the sentence ‘no ifs, ands or buts’ is more appropriate for someone familiar with this warning from childhood than someone who has never heard it before. The paper folding task should not be prompted after the initial instructions. It tests understanding of language as well as praxis and memory. Praxis – copying the intersecting pentagons tests constructional apraxia. It is quite a difficult test and can be followed by an easier test or the clock drawing test Gnosis – recognition is tested in the more extensive CAMCOG by using pictures, small objects and commands (www.rcpsych.ac.uk).

Final Project – January 2005 Maria de Boer and Fieke Wermers

Theoretical Background Report

Jebsen Hand Function Test The Jebsen Hand Function Test (developed by Jones, 1986) is a standardized test designed to provide objective measurements with normative data, assessing broad aspects of hand function required for ADLs in a population ranging from 20 to 94 years old. The Jebsen Hand Function Test consists of seven subtests: (1) writing a short sentence reflective of third grade intelligence; (2) simulated page turning using 3 X 5 inch index cards; (3) picking up small common objects (paper clips, bottle caps, and US pennies) and placing them into a container; (4) stacking checkers; (5) simulated eating using a teaspoon to place large kidney beans into a container; (6) moving empty, large cans; and (7) moving large, weighted cans. All subtests are performed with the patient seated at a table (comfortable, feet on floor, elbows at 90 degrees), facing the assessor. Each subtest is timed separately, completed with the nondominant hand first, and then repeated with the dominant hand. Scores for each subtest are timed to the nearest tenth of a second and added together for a total score. A lower score indicates greater dexterity. The test has recently been standardised on a British normal population. (unpublished norms, L. Jones, National Hospital for Nervous Diseases). The original American directions have been slightly altered to allow for differences in terminology (Hardin, 2002).

Modified Fatigue Impact Scale (MFIS) Fisk et al. developed the Fatigue Impact Scale (FIS) (developed by Fisk et al., 1994) starting with interviews of 30 multiple sclerosis (MS) patients to suggest questionnaire items, followed by a validation study in 105 patients with MS, 145 patients with chronic fatigue syndrome (CFS), and 34 hypertensive controls (7,8). The FIS was designed "to assess the problems in patients' quality of life that they attribute to their symptoms of fatigue." It has separate subscales in which patients rate the impact of fatigue on physical (10 items), cognitive (10 items), and psychosocial functions (20 items). The Modefied Fatigue Impact Scale (MFIS) is a shortened version of the 40-item FIS which may induce fatigue because of its length. Therefore the MFIS may be more appropriate. Although no basic analyses of the MFIS have been published, it has been used in clinical practice and several clinical trials and intervention studies (Kos, et al., 2005 in print). EuroQol (EQ-5D) The EQ-5D (developed by the EuroQoL Group, 1990) comprises five questions on mobility, self care, pain, usual activities, and psychological status with three possible answers for each item (1=no problem, 2=moderate problem, 3=severe problem) A summary index with a maximum score of 1 can be derived from these five dimensions by conversion with a table of scores. The maximum score of 1 indicates the best .

Parkinson’s Disease Questionnaire (PDQ-39) The PDQ-39 (developed by Peto, et al., 1995) is a 39-item questionnaire, which contains 8 subscales measuring mobility, ADL, emotional well-being, stigma, social support, cognitive impairment, communication and bodily discomfort. It is a self-administered questionnaire, scored on a scale of 0 to 100, where lower scores indicate better-perceived health state. The Final Project – January 2005 Maria de Boer and Fieke Wermers

Theoretical Background Report

test takes up to 15 minutes to administer. Initially in its development, Peto et al. (1995) piloted a 63-item questionnaire to 454 persons with PD, with response rate of 82%. Following statistical analysis, the number of questions was reduced to 39 (accounting for relevance and repetition) and a mail out survey was completed (Gaudet, 2002). Unified Parkinson Disease Rating Scale (UPDRS) The UPDRS (developed by Fahn, et al., 1987) is considered the gold standard for the measurement of the signs and symptoms of PD. It was developed in an attempt to assimilate the best of the current scales at the time and includes sections that evaluate mentation and physical abilities. The UPDRS also includes measurement of both the on and off performances, in order to account for the daily fluctuations of the disease. There are five sections to this scale, which measure: 1) signs and symptoms, in a 0-4 quantitative scale (0=normal, 4=severe), as these relate to mental deficits, activities of daily living and motor performance; 2) complications of the disease as related to dopaminergic treatment; 3) the Hoehn and Yahr scale; 4) the Schwab and Enland scale and 5) items such as weight, blood pressure and pulse. The motor section is performance-based and measures the performance components specifically affected by Parkinson’s disease. The ADL component of the UPDRS examines occupational performance from a historical point of view. The items include speech, swallowing, handwriting, eating, dressing, hygiene, turning in bed, falling, walking, tremor (as it relates to interfering with ADL) and sensory complaints. This section targets specific areas commonly affected by Parkinson’s. The data are ordinal and based on historical information from the client and their significant others. The Modified Schwab and England (which is part of the UPDRS) rates independence on a scale from 0% (vegetative functions only) to 100% (completely independent), in 10% increments. The Modefied Hoehn and Yahr (H&Y) is a disease staging scale which classifies severity into eight levels: 0= no signs of the disease; 1= unilateral disease; 1.5= unilateral disease without impairment of balance; 2= bilateral disease without impairment of balance; 2.5= mild bilateral disease with recovery on pull testing; 3= mild to moderate disease with some postural instability; 4= severe disability but still able to stand or walk unassisted; and finally, 5= wheelchair bound or bedridden unless aided. The stages of the H and Y correlate well with the UPDRS (Gaudet, 2002). References -

http://www.ampsintel.com/overview.htm Biemans, M.A., Dekker, J., & van der Woude L.H. (2001). The internal consistency and validity of the Self-Assessment Parkinson's Disease Disability Scale. Clinical Rehabilitation. 15(2), 221-228. Donnelly, C., Carswell, A. (2002). Individualized outcome measures: A review of the literature. Canadian Journal of Occupational Therapy. 66, 84-94. Gaudet, P. (2002). Measuring the impact of Parkinson’s disease: An occupational therapy perspective. Canadian Journal of Occupational Therapy, 66, 104-113. Hardin, M. (2002). Assessment of hand function and fine motor coordination in the geriatric population. Topics in Geriatric Rehabilitation, 18, 18-27. http://www.harcourt-uk.com/product.aspx?skey=2842

Final Project – January 2005 Maria de Boer and Fieke Wermers

Theoretical Background Report

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Hobson, J. P., Edwards, N. I., & Meara, R. J. (2001). The Parkinson's Disease Activities of Daily Living Scale: a new simple and brief subjective measure of disability in Parkinson's disease. Clinical Rehabilitation. 15(3), 241-246. Kos, D., Kerckhofs, E., Carrea, I., Verza, R., Ramos, M., & Janša, J. (2005). Evaluation of the Modified Fatigue Impact Scale in four different European countries. In print. http://www.lumc.nl/2050/research/scopa_homepage.html Malka Itzkovich, Betty Elazar, Sarah Averbuch (2000). LOTCA, Loewenstein Occupational Therapy Cognitive Assessment Second Edition, Manual, Pequannock NJ: Maddak Inc. Marinus, J., Visser, M., Verwey, M., Verhey, F. J. R., Middelkoop, H. A. M., Stiggelhout, A. M., & van Hilten, J. J. (2003). Assessment of cognition in Parkinson's disease. Neurology. 61(9), 1222-1228. http://www.nemc.org/psych/mmse.asp http://www.rcpsych.ac.uk/publications/gaskell/semOAP/ch1.pdf Schrag, A., Slei, C., Jahanshahi, M., & Quinn, N. P. (2000). The EQ-5D - a generic quality of life measure-is a useful instrument to measure quality of life in patients with Parkinson's disease. Journal of Neurology Neurosurgery and Psychiatry, 69, 67-73. Schwid, S. R., Covington, M., Segal, B. M., & Goodman, A. D. (2002). Fatigue in multiple sclerosis: Current understanding and future directions Steven. Journal of Rehabilitation Research and Development, 39, 211-224. Stallibrass. C., Sissons, P., & Chalmers, C. (2002). Randomized controlled trial of the Alexander technique for idiopathic Parkinson's disease. Clinical Rehabilitation. 16(7), 695-708. Sunderland, A., Watts, K., Baddeley, A. D., & Harris, J. E. (1986). Subjective memory assessment and test performance in elderly adults. Journal of Gerontology. 41(3), 376384. Williams Riska, L. & Allen, C. K. (1985). Research With Non-Disabled Population. In Allen C. K. (Ed.). Occupational Therapy for Psychiatric Diseases: Measurement and Management of Cognitive Disabilities, 315-338. Boston: Little Brown. Wilson, B., Cockburn, J., Baddeley, A. (1991). The Rivermead behavioural memory test, Manual. (2nd edition). Bury St Edmunds: Thames Valley Test Company (1985). WHO Classification, Assessments, Survey’s and Terminology Team (2001). International Classification of Functioning, Disability and Health (ICF). Geneva: World Health Organization.

Final Project – January 2005 Maria de Boer and Fieke Wermers

Theoretical Background Report

APPENDIX B: Presentation Evidence-based Practice Introduction At the 30th of November 2004 we have given a presentation about Evidence-based practice at the department Neurology of the University Medical Centre Ljubljana. In this presentation we defined the term ‘Evidence-based practice’, the importance of Evidence-based practice, a methodological way of Evidence-based practice, examples of general difficulties of Evidence-based practice and in conclusion the benefits of Evidencebased practice. The aims of the presentation were (in order of importance): - To implement evidence into practice also the experience of the therapist and the needs of the individual client have to be taken into consideration. This is in the hands of occupational therapists of the department Neurology, using their own experience in relation with their own individual client. This presentation is of assistance of the occupational therapists to give a structure to tackle this practice. - Evidence-based practice is an important topic in current health care practice. This applies to all practitioners in health care. The presentation is also given to make the people aware of evidence-based practice and give them information on this subject and the method associated. In this appendix, the PowerPoint presentation about Evidence-based practice given, by reproducing the slides of the presentation.

Final Project – January 2005 Maria de Boer and Fieke Wermers

Theoretical Background Report

APPENDIX C: Final Presentation Introduction At the 16th of December 2004 we have given our final presentation, of our project about Quality of Care and Evidence-based practice in the Occupational Therapy practice of people with Parkinson’s disease at the department Neurology of the University Medical Centre Ljubljana (Slovenia). We have given this presentation because we wanted to inform all the involved disciplines of the department Neurology, about the process and the content of our project, concerning the occupational therapy practice for people with Parkinson’s disease. The information that was given, is for the use of the people involved for the benefit of the care for people with Parkinson’s disease. In this appendix, the PowerPoint presentation about the final presentation given, by reproducing the slides of the presentation.

Final Project – January 2005 Maria de Boer and Fieke Wermers