Central Nervous System Tumour Group
Brain Tumour Patient Pathway Project Report
Project Sponsor: Dr Kate Drummond, Neuro-surgeon, Royal Melbourne Hospital Project Officer: Kerry Mackenzie, WCMICS Tumour Group: Central Nervous System (CNS)
Acknowledgements WCMICS would like to thank the following people for their contribution to this project. CNS Tumour Group members: Dr Kate Drummond, Neurosurgeon, Royal Melbourne Hospital -
Assoc/Prof Michael Murphy, Surgical Director/ Neurosurgeon, St Vincent’s Health
-
Mr Damien Tange, Head of Neurosurgery/ Neurosurgeon, Peter MacCallum Cancer Centre
-
Assoc/Prof Mark Rosenthal, Director of Medical Oncology, Medical Oncologist, Royal Melbourne Hospital
-
Dr Anthony Dowling, Medical Oncologist, St Vincent’s Health
-
Dr Ross Jennens, Medical Oncologist, Neuro-oncology service, Peter MacCallum Cancer Centre
-
Dr Michael Guiney, Director of Radiation Oncology Victoria, Radiation Oncologist, Peter MacCallum Cancer Centre
-
Rachel Smith, Discharge Nurse, Neurosurgery Unit, Royal Melbourne Hospital
-
Jenny Howe, Clinical Nurse Coordinator, Neuro-oncology service, Peter MacCallum Cancer Centre
WCMICS would also like to thank all other CNS cancer clinicians, allied health staff, consumers and many others who contributed to this project.
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Table of Contents Acknowledgements 1.
Executive Summary……………………………………………………………………………………………………3
2.
Recommendations………………………………………………………………………………………………………4
3.
Introduction………………………………………………………………………………………………………………10
4.
Background……………………………………………………………………………………………………………….10
5.
Project Aim……………………….……………………………………………………………………………………….10 5.1
6.
Project objectives……………………………………………………………………………………………….11 Methodologies…………………………………………………………………………………………………………..11
6.1
Project Scope………………………………………………………………………………………………………11
6.1.1
Services……………………………………………………………………………………………………………….11
6.1.2
Points in the pathway………………………………………………………………………………………….11
6.2
Evidence based guidelines………………………………………………………………………………….11
6.3
Developing the ideal pathway…………………………………………………………………………….11
6.4
External data sources………………………………………………………………………………………….12
7.
Preliminary consultation……………………………………………………………………………………………12 7.1
Site-specific data collection………………………………………………………………………………..12
7.1.2
Stakeholder interviews……………………………………………………………………………………….12
7.1.3
Retrospective audit……………………………………………………………………………………………..13
7.1.4
Consumer interviews………………………………………………………………………………………....13
7.2
CNS Tumour Group meetings and communication……………………………………………13
7.3
Project limitations……………………………………………………………………………………………….13
8.
CNS Project Results and Discussion ……………………………………………………………………….14 8.1
The service context…………………………………………………………………………………………….14
8.1.1
Peter MacCallum Cancer Centre…………………………………………………………………………14
8.1.2
Royal Melbourne Hospital……………………………………………………………………………………15
8.1.3
St Vincent’s Hospital……………………………………………………………………………………………15
8.2 9.
The WCMICS patient population and service volume…………………………………………15 The CNS Patient Pathway…………………………………………………………………………………………19
9.0
Retrospective audit……………………………………………………………………………………………..19
9.1
Pathway point 1: Initial diagnosis and referral………………………………………………….20
9.2
Pathway point 2: Initial diagnosis to Treatment planning…………………………………26
9.3
Pathway point 3: Treatment……………………………………………………………………………….33
9.4
Pathway point 4: Follow-up Care……………………………………………………………………….37
9.5
Pathway point 5: Treatment of Recurrence and End of Life Care…………………….40
9.5.2
Supportive care…………………………………………………………………………………………………….41
9.5.3
Coordination of care…………………………………………………………………………………………….42
10.
Care coordinator role………………………………………………………………………………………………..43
11.
Summary of Service gaps…………………………………………………………………………………………44
12.
The Next Steps………………………………………………………………………………………………………….45
13.
Appendices table of contents……………………………………………………………………………………46
14.
References…………………………………………………………………………………………………………………83
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1. Executive Summary The Central Nervous System (CNS) Tumour Group received funding in 2007 to undertake a service improvement, patient pathway mapping and care coordination project. The Project was undertaken within three of the health services across the WCMICS catchment: Peter MacCallum Cancer Centre (PMCC), Royal Melbourne Hospital (RMH) and St Vincent’s Hospital (SVH). These health services provide treatment and care for CNS Brain Tumour cancer patients. The objectives of the project were to: •
Review the current actual patient pathway against the ideal pathway for CNS Brain Tumour cancer patients to allow identification of the gaps and duplications in patient care coordination.
•
Analysis of gaps/ duplications to provide solutions to improve care coordination and to ensure patients receive consistent, high quality and timely care.
•
Overall, to provide a framework for implementation and strengthening of care coordination and communication processes within and across WCMICS hospitals.
The Methodology of the project was: •
During the development of the Ideal Patient Pathway, two sets of guidelines were reviewed and a detailed guideline matrix was developed. The recommendations for different points in the ideal pathway were identified from each set of guidelines and summarised.
•
Data collection: -
-
Stakeholder interviews between the project coordinator and stakeholders from each of the three sites. Retrospective audit of ten CNS medial histories at each of the sites. Consumer interviews conducted with three brain tumour patients from two of the hospitals. Review of the CNS Victorian Admitted Episode Dataset (VAED) from Department of Human Services (DHS).
There were a number of findings, the most notable being: • • • • •
Most patients are treated within reasonable waiting times however there is a significant variation. Not all patients are benefiting from being discussed at Multidisciplinary Team Meetings (MDM), and where these are in place, not all professions are in attendance. Most treatment pathways are complex with multiple interventions by an extensive range of professionals, and would benefit from better coordination. Screening for supportive care needs is not being provided. The complex management of patient’s discharge and ongoing care would benefit from coordination.
The 23 recommendations have been made cover the following themes: • Planning and treatment • Information • Staffing • Coordination of Care • Communication The recommendations can be found in Section 2 and have been ranked according to priority, time required and ease of implementation. The recommendations address the gaps/duplication of the service and ways forward to improve care coordination. Some of these recommendations are site-specific while others are Integrated Cancer Service (ICS) strategies for improving the delivery of CNS cancer services. The main recommendation is that Care Coordinators be provided for CNS patients. The role would include patient care across the CNS Brain Tumour patient pathway both within the unit and in liaise with primary/community/palliative care services following discharge. With the implementation of Care Coordinators, patient care will be better coordinated and patients will have access to a key person to coordinate their care throughout the pathway.
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2. Recommendations The following table lists a series of recommendations to facilitate service improvement within and across WCMICS CNS cancer service sites. The priority, time frame, ease of implementation, and the measures to assess progress have been included for each recommendation. Priorities have been assessed as:
Low (L): Achievement will facilitate ‘gold standard’ service delivery.
Medium (M): Must be achieved in order for a high quality standard of service to be achieved
High (H): Must be achieved in order for an acceptable standard of service to be achieved
Time frames have been set as:
Short term (S): Implementation to be completed within 6 months
Medium term (M): Implementation to be completed within 12 months
Long term (L): Implementation will take more than 12 months to achieve.
Ease of implementation is defined as:
Easy (E): Implementation can be achieved with existing resources and a small amount of additional effort by staff
Moderate (M): Some additional resources and/or effort will be required for successful implementation
Hard (H): Significant additional resources and/or effort will be required for successful implementation.
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Pathway Point
No.
Recommendation
Care Coordination
23.
A Care Coordinator to be available in Neuro-oncology services to coordinate the complex patient care across the CNS Brain Tumour patient pathway both within the unit and in liaison with primary/ community/ palliative care services following discharge.
Supportive Care screening
22.
Time to diagnosis
3.
Tests
4.
Time to diagnosis
5.
Priority L/M/H
Time frame S/M/L
Implementa tion E/M/H
Measure 1.
Measure 2.
Relevant Hospitals
Business case developed and funded.
A care coordinator role is implemented and evaluated.
PMCC, RMH and SVH
H
S
H
Supportive Care screening is introduced or strengthened across Neuro-oncology services. This should include: - The development of clear screening protocols - The development of internal and external referral pathways - Implementation of re-screening at priority points in the pathway. A clinical protocol is developed and implemented to guide the timely ordering of tests/ investigations.
M
M
H
Supportive care screening tool developed and implemented.
All patients receive supportive care screening and are re-screened (Retrospective audit).
PMCC, RMH and SVH
H
S
M
Clinical protocol developed and implemented in to service.
PMCC, RMH and SVH
Protocols are developed and implemented for the scheduling test/investigations and collation of results. Investigate outliers against and agreed maximum time from referral to diagnosis. Investigate action to feedback to referring clinicians i.e. GPs and other hospitals.
H
S
M
H
S
M
Clinical protocol developed and implemented in to service. To measure reduction (%) in time to diagnosis (retrospective audit).
% of patients receive their diagnosis in recommended time (retro.audit) % of results scheduled in accordance to protocol.
PMCC, RMH and SVH RMH and SVH
5
Brain Tumour Information
6.
A standardised WCMICS-wide approach to information provision for brain tumour patients and their carers to be developed and implemented.
H
S
M
Standardised WCMICS-wide information provision is developed and implemented.
This may include: - The use of currently published information from external sources e.g. CCV. - Standard information packs. - A range of information that can be tailored to the patient’s needs and point in their cancer journey.
All patients are provided with consistent, high quality, generic and tailored resources in accordance with the agreed policies and protocols.
WCMICS and PMCC, RMH and SVH
Decision to Treat
7.
Neuro-oncology services to investigate outliers against the 2 week maximum time from referral to diagnosis, to identify and address reasons for treatment delays, with the acknowledgement if appropriate variations in care.
M
M
M
% Reduction in the number of patients who wait longer than 2 weeks for treatment decisions (retrospective audit).
Surgery
8.
Further investigation should be considered to quantify the no. of patients who are offered surgical treatment. If appropriate protocols can then be developed and implemented to ensure all patients are considered by multidisciplinary teams for treatment.
M
M
M
Appropriate protocol developed and implemented to ensure all patients are considered for surgery.
No. of patients offered surgical treatment (prospective audit completed).
RMH and SVH
Multidisciplinary Team
9.
All services have access to a full range of professionals within Neurooncology MDT
H
S
H
Attendance list developed and implemented.
% of core team members attending MDM.
PMCC, RMH and SVH
PMCC, RMH and SVH
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Multidisciplinary Team Meeting
10.
MDM are held regularly to facilitate prospective treatment planning for: - New patients with complex needs. - patients with a recurrence
H
S
H
A treatment protocol will be established for new patients with simple needs.
MDM held regularly.
Treatment protocol established and implemented.
Percentage of patients whose treatment plan is developed at MDT meeting prior to commencement of their treatment.
PMCC, RMH & SVH
Strengthening MD meetings
11.
All services should establish and implement processes and protocols to strengthen the documentation of the MD recommendations in the patient’s medical record, associated information systems, and for communication to the GP (this will occur via WCMICS strengthening the MDM program).
H
S
E
Documented Terms of Reference and protocols implemented to strengthen MD documentation.
Treatment planning decisions recorded and % of patient histories that have evidence of MDT recommendations
PMCC, RMH and SVH
Multidisciplinary treatment planning
12.
All patients will have the MD recommendations discussed with them and a treatment plan agreed.
H
S
M
Process developed and implemented.
% of patient histories where there is evidence that the treatment plan is discussed and agreed with patient.
PMCC, RMH and SVH
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% of meetings attended by Radiation Oncologist. Retrospective audit conducted.
WCMICS, PMCC, RMH and SVH
Audit conducted to determine all patients receive timely access to allied health services. All sites have electronic templates for letters, discharge summaries and MDM treatment plan/ recommendations and use for 100% of correspondence. This can be determined by retrospective audit.
PMCC, RMH and SVH
All patients receive information of name of contact and contact details.
% of patients given Care Coordinator name and contact details at initial contact with patient.
PMCC, RMH and SVH
% of patients offered treatment.
% of patients where protocol is followed.
RMH and SVH
MD Team
13.
The MDM should include a Radiation Oncologist as part of the MD team
H
S
M
A Radiation Oncologist attends MDM regularly.
Multidisciplinary treatment planning Allied Health
14.
The treatment plan should be scheduled and coordinated including follow-up care. There is timely access to allied health professionals where appropriate.
H
S
H
H
S
H
% of patients followed-up within agreed waiting times. Patients are accessing allied health professionals in a timely manner.
Communication
16.
The process for timely communication of critical information to referring GPs and specialists will be streamlined. This may include the development of: - Neuro-oncology unit letterhead listing names of treating team members which will be used for all correspondence with referring doctors. - Electronic templates for letters - Electronic templates for discharge summaries - Electronic templates for MDM recommendations/ treatment plan
H
S
E
Development of electronic templates for letters, discharge summaries and MDM treatment plan/ recommendations and implemented.
Care Coordination
17.
The patient is given a named point of contact including contact details (with alternative if not available).
H
M
H
Treatment
18.
Further investigation should be considered to quantify the no. of patients who are treatment.
M
M
M
15.
PMCC, RMH and SVH
PMCC, RMH and SVH
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Imaging during follow-up
19.
Recurrence
20.
Clinical Trials
21.
Strengthening the quality of referrals.
If appropriate, protocols can then be developed and implemented to ensure all patients are considered by multidisciplinary team members for treatment. Further investigate the reasons MRIs are not being performed i.e. clinical or administrative, and develop and implement protocols for the scheduling and actioning the results. Protocols are developed and implemented to ensure patients with a suggestion of recurrence have a MRI and the results are reviewed
Protocol developed and implemented.
H
S
H
Audit completed.
Protocol developed and implementation.
PMCC, RMH and SVH
H
S
M
Protocol developed and implemented.
PMCC, RMH and SVH
Protocols are developed and implemented so that all patients are considered for clinical trials as appropriate.
H
M
H
Development of protocol and implemented.
% of patients receiving MRI and results in a timely manner (retrospective audit). % of eligible patients offered clinical trial.
1.
WCMICS to work with General Practice Victoria (GPV) to ensure distribution of….. Guidelines for the management of patients with suspected brain tumours in the Western & Central Metropolitan regions, to raise awareness for early and timely diagnosis and referral.
L
L
H
All GPs receive a copy of the GP guidelines as an accompaniment to better communicating with them about their newly diagnosed patient.
Survey conducted after 6 months to establish usefulness of guidelines distributed to GPs.
WCMICS
2.
Within the context of state-wide projects, a Brain tumour referral template will be developed and made available on the WCMICS website for use by GPs and other referring clinicians, and will include the management of an urgent referral.
L
L
H
A Brain tumour referral template developed and available on WCMICS website.
% of patients referred to tertiary services using templates.
WCMICS
PMCC, RMH and SVH
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3. Introduction In 2007 the Central Nervous System (CNS) Tumour Group received funding to undertake a service improvement, patient pathway mapping and care coordination project. The Project was undertaken within three of the health services across the WCMICS catchment: Royal Melbourne Hospital (RMH), St Vincent’s Health (SVH) and Peter MacCallum Cancer Centre (PMCC). These health services provide treatment and care for CNS Brain Tumour cancer patients. The Project Sponsor, Dr Kate Drummond, and the CNS Tumour Group members guided and oversaw the project work conducted by WCMICS. The patient pathway project key findings and recommendations are presented, focusing on care coordination of the CNS services within the three hospital sites. This report provides evidence and direction for implementing care coordination and service improvements.
4. Background Patients with brain tumours have complex physical, cognitive, emotional and psycho-social deficits and have a high need for assistance during the period from diagnosis to death. High grade glioma patients experience a rapid decline in function, with an average survival period of one year1. This is a narrow window of opportunity to provide services which will assist the patient and family, and therefore it is imperative that this service provision is timely, streamlined and coordinated. Care Coordination for patients and their families is central to the Government’s cancer reform agenda and the topic of the newly released Government policy document Linking Cancer Care – A guide for implementing coordinated cancer care2. It is also a key enabler of high quality, comprehensive, consistent and coordinated cancer care, information sharing, and relationship building within and between primary, secondary, and palliative care service providers. The guide lists the benefits of improving patient care coordination as: •
Improving patient outcomes.
•
Increased referral to appropriate services and patient compliance.
•
Better communication between providers and decrease in duplication and costs.
WCMICS CNS brain tumour services have variable access to care coordination for their patients and family members and/or carers.
5. Project Aims The aim of this project is to review the current actual patient pathway against the ideal pathway as outlined in the Patient Management Framework (PMF)3 and National Institute for Clinical Excellence Guidance (NICE)4 for CNS Brain Tumour cancer patients. This will allow identification of the gaps and duplications in patient care coordination. An analysis of these gaps/duplications will provide solutions to improving care coordination and to ensure patients receive consistent, high quality and timely care. This project will provide a framework for implementation and strengthening of care coordination and communication processes within and across WCMICS hospital sites.
1
2 3
Rosenthal, MA et al, Management of glioma in Victoria (1998-2000): retrospective cohort study. MJA 2006:272. Department of Human Services, 2007, Linking Cancer Care – A guide for implementing coordinated cancer care
Department of Human Services, 2006, Patient Management Framework, Central nervous system tumour stream: malignant glioma 3 National Institute for Clinical Excellence Guidance, 2006. Improving Outcomes for People with Brain and Other CNS Tumours. UK.
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5.1 Project Objectives Key objectives of this project include: 1. Review the literature. 2. Conduct a service assessment of current pathway at each hospital site by mapping the current pathway against the ideal pathway. 4. Conduct a gap analysis between ideal and current pathway. 5. Develop potential solutions, identifying critical points in the patient pathway. 6. Develop generic solutions, tumour specific solutions and site specific solutions. 7. Identify solutions which will deliver a coordinated patient pathway. 8. Identify the tasks and responsibilities which could be included in a care coordination role/s and the identification of tasks, responsibilities which should not be included in such a role. 9. Determine the potential improvements in patient care outcomes. 10. Determine the evaluation criteria for such a role and investigate opportunities for building on existing models of care coordination. 11. Identify transferable learnings and share these across the WCMICS Tumour Groups (to be facilitated by WCMICS Directorate and Hospital Admin Coordinators).
6. Methodologies 6.1 Project Scope The Project scope included conducting an analysis of key points in the pathway, at the three WCMICS CNS cancer services and referencing the current service activity against the patient management framework plus other evidence-based guidelines. To include all malignant glioma brain tumours and excluding cerebral metastases and low grade glioma brain tumours.
6.1.1 Services The patient pathways were mapped at the following sites: •
Peter MacCallum Cancer Centre (PMCC)
•
Royal Melbourne Hospital (RMH)
•
St Vincent’s Hospital (SVH)
6.1.2 Points in the pathway The clinical pathway for CNS patients was mapped at each of the three hospital sites from referral to the end point of their pathway. The end points of the patients pathway was either the patient had finished their initial treatment and was to be transferred back to their referring hospital, referred on for ongoing treatment or referred for follow-up with another service.
6.2 Evidence based guidelines The following guidelines were used to inform the Project and the development of the ideal pathway. •
The Department of Human Services (DHS). 2006. Patient Management Framework for Central nervous system tumour stream: malignant glioma, Victoria, Australia
•
The National Institute for Clinical Excellence Guidance (NICE). 2006. Guidance on cancer Services, Improving Outcomes for People with Brain and Other CNS Tumours, UK.
It is acknowledged that there are few written evidence based guidelines for the CNS cancer patients and aside from the PMF, the NICE guidelines were the only other guideline found. The Cancer Council Victoria (CCV) are currently developing guidelines for the management of malignant brain tumour patients which are due for publication at a later date.
6.3 Developing the ideal pathway The two sets of guidelines were reviewed and a detailed guideline matrix was developed. The recommendations for different points in the ideal pathway were identified from each set of guidelines and summarised. The table was circulated to key stakeholders for comment. A small number of comments were received and these informed the next steps.
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A visual patient pathway was drafted, which included the five flow charts in Section 9 depicting different points in the patient pathway. •
Initial referral and diagnosis
•
Diagnosis confirmed to treatment planning
•
Treatment
•
Follow-up
•
Palliative treatment and referral to end-of-life care.
Within each flowchart, a number of the recommendations from the two key guidelines were mapped. Given that this was to be an ‘ideal’ pathway, the most specific of recommendations were used, although a few were disregarded particularly if the recommendations were more relevant to UK health care services than Australia. This document was recirculated to the key stakeholders for further comments. The key elements of the pathway were then used to analyse the service data at each site. The final version of the ideal pathway is located in Appendix 2.
6.4 External data sources Victorian Admitted Episode Dataset (VAED) VAED data has been collected and analysed. This includes data covering all inpatient separations whether same-day or multi-day. Separation numbers closely approximate the number of inpatient discharges. VAED CNS data document is located in Appendix 4.
7. Preliminary consultation From January 2008, initial unstructured interviews were being held between with the project coordinator and stakeholders from each of the three sites to gain an early understanding of the CNS cancer service at each site.
7.1 Site-specific data collection Approval for the site-specific data collection to be undertaken as part of quality assurance activities was sought and gained from the individual Institutional Ethics Committees. While there were some common data collection approaches at each service site, there was some variation in the scope and methods used, dependent on the Ethics Committee requirements. Table 1: Summary of all internal data collection methods at the hospital sites Data Collection Activity Stakeholder interviews (number of interviewees) Retrospective audit (number of records audited) Consumer interviews (number of interviewees)
Peter MacCallum Cancer Centre Yes (n=2)
Royal Melbourne Hospital Yes (n=6)
St Vincent’s Health Yes (n=5)
Yes (n=10)
Yes (n=10)
Yes (n=10)
No (n=0)
Yes (n=2)
Yes (n=1)
The different types of data collection undertaken are outlined below:
7.1.2 Stakeholder interviews Individual structured interviews were conducted at each service site and were aimed at extracting stakeholders’ perspectives on the patient pathway, service strengths, gaps and opportunities for service improvement. Stakeholders included Medical, Nursing and Allied Health clinicians. A full list of interviewees is located in the Appendix 3.
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7.1.3 Retrospective audit At each of the hospital sites a retrospective audit of medical records was undertaken. A sample of ten CNS brain tumour patients was selected. These were defined by ICD diagnostic and procedure codes with a primary presentation between 2003 and 2007. At all three sites the medical records audited were paper-based. The patients sample included those at various stages in their cancer journey, from newly diagnosed to death. Histories were tracked back to their first contact with the hospital for suspected and identified brain tumour and data collected from that point until they were discharged from the hospital. The sampling timeframe was chosen to ensure that all or most points in the patient pathway could be tracked for each patient. A data collection tool was developed for undertaking the retrospective audit. Fields included: •
Referral date & source
•
Date & investigation tests type prior to presentation
•
Date, presentation & diagnostic tests
•
Diagnosis, decision to treat, procedure type, multidisciplinary treatment planning and GP communication
•
Allied health interventions
•
Psychosocial / supportive care screening and interventions
•
Treatment and symptom management
•
Follow-up and referral to palliative care services.
The retrospective data collection tool is located in Appendix 5.
7.1.4 Consumer interviews The Project Sponsor contacted consumers directly and explained the project, seeking approval for their participation in telephone interviews. Since this was a quality assurance activity, Ethics Committee approval was not considered necessary. The Project Coordinator then contacted the nominated consumers via telephone and organised an appropriate time to conduct the interviews. Three interviews were undertaken, one with a patient who originally received their surgery with one service but is now a long-standing patient of another service. The other two patients recently received their diagnosis and treatment at the same hospital site.
7.2 CNS Tumour Group Meetings and Communication Quarterly meetings were held throughout the project with the CNS Tumour Group members. Updates of the project progression have been presented at the quarterly tumour group meetings and via email which gave Clinicians the opportunity to comment on the work produced throughout the project.
7.3 Project limitations This Project provides a snapshot of the CNS cancer services within and across three WCMICS hospital sites and will not reflect all aspects of the patient pathway. A number of key factors influenced the Project’s progress. Data collection across the whole patient pathway has provided a good overview of the patient pathway at all sites. Different service models also existed across sites which included: •
The range of treatment at each hospital varied. This can impact on service delivery processes, for example PMCC offer secondary treatments and care whereas RMH and SVH offer primary and secondary treatment and care.
•
Different frequency of multidisciplinary meetings potentially impact on multidisciplinary treatment planning; not all of the sites had a MDT meeting in place for Neuro-oncology services.
•
Limited access to a Nurse Care Coordinator.
13
•
Within PMCC, a significant proportion of new patients are referred for secondary treatment following diagnosis, whereas in the other services, the initial presentation is for diagnostic purposes.
A number of factors also influenced the overall data collection and analysis. These include: •
Variable levels of documentation within paper-based medical records. This included gaps in documentation and difficulty auditing in the medical record for some patients at some sites.
•
The project was delayed due to awaiting the approval of retrospective audits by individual hospital’s Human Research Ethics Committees.
•
A relatively small number of patient records were accessed for the medical record audits. Gaps in documentation meant that for many of the audit measures data was only available on a smaller sub-set of patients.
•
VAED data does not reflect PMCC activity because there was a low volume of CNS patients admitted for treatment and data recorded.
•
As indicated, there was only three consumers interviewed for this project.
Despite these minor limitations, the data collected from the different range of sources does provide some common themes and in many instances confirmed and quantified issues identified by stakeholders.
8. CNS Project Results and Discussion The project results and discussions are divided into three sections: Section 8 describes the service context including the service profiles, the population and service volume and key demographic information. Section 9 considers the key findings across the different points in the patient pathway including the ideal patient pathway. Section 10 considers those aspects of care that cross the whole patient pathway including supportive care and coordination of care. Section 11 summarises all of the services gaps identified within section 8, 9 and 10 of report.
8.1 The service context The following provides an overview of the CNS cancer services across the three hospital sites.
8.1.1 Peter MacCallum Cancer Centre Peter MacCallum Cancer Centre (PMCC) is Australia’s only dedicated cancer hospital. It provides multidisciplinary (MD), holistic care in a cancer treatment and research environment. PMCC focus on provision of MD care within specialist tumour streams. An emphasis on the role of the Clinical Nurse Coordinator (Care Coordinator), provision of good supportive care, and involvement of allied health in the delivery of clinical services are all features of PMCC model of cancer care. The Neuro-oncology service offers comprehensive assessment and management for patients with CNS Brain tumours. The Neuro-oncology service operates a weekly clinic for discussion of new and existing brain tumour patients encompassing treatment planning, treatment and follow-up tests. Psychosocial and supportive care screening and assessment which extend beyond the patient’s medical needs are important focuses as well. PMCC offers a range of radiotherapy and chemotherapy treatments to its brain tumour cancer patients and, where eligible, patients are offered the opportunity to participate in clinical trials including trials of novel therapies. PMCC operates as a tertiary referral centre to other major hospitals and offers a range of specialist services such as PET scanning and radiation oncology that are not available at some other sites within the WCMICS catchment.
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8.1.2 Royal Melbourne Hospital The Royal Melbourne Hospital (RMH) is a tertiary, teaching referral hospital providing specialist, general medical, major trauma and surgical services including oncology. The Neuro-surgical service is a multidisciplinary service that offers diagnostic, treatment and followup services to brain tumour cancer patients. The MD team began meeting weekly in January 2008 and is comprised of specialists from Neurosurgery, Medical Oncology, Pathology, Radiology, Nursing, Allied Health and Palliative Care. Radiation Oncologist’s from PMCC and Radiation Oncology Victoria also attends the MDM’s. Treatment offered at RMH for brain tumour patients includes complex surgical procedures. Chemotherapy is offered on site within the medical oncology department. The Neuro-multidisciplinary outpatient clinic operates once per week, in which surgical review, treatment planning and review for new and follow-up patients is undertaken. RMH patients requiring Radiation Oncology are referred to local Radiation Oncology services or PMCC.
8.1.3 St Vincent’s Hospital St. Vincent's Health (SVH) provides acute medical and surgical services, aged care, diagnostics, rehabilitation, allied health, mental health, palliative care and residential care. Delivery of cancer services is an important focus of the hospital’s work and since 2003 SVH has been delivering cancer services under the SVH Cancer Initiative. This initiative aims to improve the cancer experience and outcomes through provision of MD care, cancer nurse care, information and psychosocial support and facilitating good continuity of care across hospital and community based services. Under the Cancer Initiative, cancer care is delivered within the tumour stream model. SVH Neurosurgical department operates two outpatient clinics that provide services weekly: on Tuesdays, a Neurosurgical Outpatient Clinic and on Wednesdays, a Neurosurgical Ward Discharge Outpatient Clinic. The clinics are differentiated by the Neurosurgical Clinic being managed by both consultants and Neuro-registrars, whereas the Neurosurgical Ward Discharge Clinic is managed by the Neuro-registrars. MD team meetings are held on the first Tuesday of every month. Team members from a range of disciplines attend the meeting including Neuro-surgical, Medical Oncology, Pathology, and Radiology and where appropriate Palliative Care and Allied Health. Since majority of the brain tumour patients present to SVH as an emergency case, the treatment plan is not determined until after surgery. The brain tumour patient may be referred to the Oncology department for further treatment once diagnosis is confirmed. SVH patients requiring Radiation Oncology are referred to local Radiation Oncology services or PMCC.
8.2 The WCMICS patient population and service volume In Victoria in 2003, there were 346 cases of primary brain and central nervous system (CNS) cancers, with 341 deaths, making it the eighth most common cause of cancer related death in Victoria (Rosenthal, M. 2006: 270). In 2005 the number of new cases of Brain and CNS cancer was 76 with the total incidence of 7.28 per 100,000 within the WCMICS catchment (CCV ICS region data, 2005). It is noted that CNS cancer patients from other Integrated Cancer Service (ICS) catchment areas including country Victoria are often transferred to WCMICS hospitals for surgery and/or treatment. Therefore numbers of patients treated at WCMICS hospitals is greater; i.e. VAED data indicates from 2002/03-2006/07 at RMH and SVH a larger number of malignant cases came from country areas to receive their health care (see appendix 5, chart 23). Demographics of the VAED data analysis indicate that SVH treat more patients from regional Victoria than RMH. RMH has an older population (by a range of measures) with a median of 57 years old and mode of 58 years old and at SVH the median and mode is 53 years old, a 5 year patient average difference. There are significantly more males treated than females.
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The following charts present data provided by VAED. It should be noted that: • All data is from VAED extracts unless stated otherwise. • CNS tumours are defined by the DHS ICD code profile. • The first episode data proxy reflects first public inpatient episode for each patient diagnosed with brain tumour. • All data is based on inpatient activity and therefore does not reflect the full range of patient activity such as Outpatient attendances and treatment. This is most noticeable for Radiation Oncology at PMCC. • The nature of the data means there could be double counting at different services as the patient passes through the system. Future analysis will be able to access state-wide data and hence drill down on this issue. • When care type changes, it may be recorded as a new episode for administration purposes. • Royal Melbourne includes: Royal Melbourne Hospital - City Campus (Campus code 1331, 1334) Melbourne Extended Care and Rehabilitation Service (Campus code 1060) •
Western Health includes:
Western Hospital, Footscray (Campus Code 1180) Sunshine Hospital (campus Code 1390) Williamstown Hospital (Campus Code 1460)
Chart 1: HospitalService (All)
NUMBER OF PATIENTS (BASED ON FIRST ADMISSION EPISODES DATA) WITH A CNS TUMOUR ICD DIAGNOSIS ACROSS WCMICS PUBLIC FACILITIES 2002/03 TO 2006/07 FY
500
Count of URNO
450 400 350 300 250
Total 439
200
417
417
440 356
150 100 50 0 2002/03
2003/04
2004/05
2005/06
2006/07
fy
In the graph above shows the total number of patients with a CNS tumour ICD diagnosis across the WCMICS public hospitals from 2002-03 to 2006-07 financial years (FY), for all CNS codes including malignant, benign and unknown/uncertain. It is noted during FY 2006/07 there was a decrease of 84 patients from the total number of CNS tumour diagnosed patients from the previous FY, 2005/06.
16
Chart 2: NUMBER OF PATIENTS (BASED ON FIRST EPISODE DATA) WITH A CNS TUMOUR ICD DIAGNOSIS CODE ACROSS WCMICS PUBLIC SITES 2002/03 TO 2006/07 FY FROM HIGHEST TO THE LOWEST
2006/07
2004/05
2005/06
2002/03
150
2003/04
2005/06 2006/07
2003/04
2004/05
200
Count of URNO
2002/03
250
fy 2002/03 2003/04 2004/05 2005/06 2006/07
2006/07
2005/06
2003/04
2004/05
2002/03
2005/06
2006/07
2003/04
2004/05
2002/03
2005/06
2004/05
2002/03
2003/04
2005/06
2006/07
2004/05
2002/03
50
2003/04
100
0 Royal Melbourne
St Vincents Hospital
Western Health
Caritas
PMCC
Werribee Mercy
HospitalService
Chart 2 shows the trend and number of patients with a CNS tumour diagnosis at RMH, SVH, Western Health, Caritas Christi, PMCC and Werribee Mercy from 2002-2003 to 2006-2007 FY. Although the main treatment and care for CNS patients is performed at three of the sites (RMH, SVH and PMCC), there is CNS tumour patient activity at other WCMICS hospital sites such as rehabilitation/palliative care.
Chart 3: fy (All) MalignantFlag Malignant
NUMBER OF PATIENTS (BASED ON FIRST ADMISSION EPISODE DATA) BY MALIGNANT/ NOT CLEARLY MALIGNANT CNS DIAGNOSIS SPLIT AT ROYAL MELBOURNE AND ST VINCENTS FOR 2002/03 TO 2006/07 FY
450
Count of URNO
400 350 300 250 Total 200
401 332
150 100 119
50
61
43
0 Royal Melbourne
St Vincents Hospital
Caritas
Western Health
PMCC
25 Werribee Mercy
HospitalService
Chart 3 shows the number of patients with malignant CNS diagnosis across WCMICS hospitals from 2002/2003 to 2006-2007 financial years from highest to lowest (except Caritas Christi Hospice). During this period RMH had the highest number of malignant CNS diagnosis of 401, whereas SVH had the second highest malignant CNS diagnosis of 332, 69 less than RMH.
17
Chart 4: fy (All) HospitalService (All) LOCALITY PROFILE FOR NUMBER OF PATIENTS BASED ON FIRST EPISODE DATA WITH A CNS TUMOUR ICD DIAGNOSIS ACROSS WCMICS PUBLIC SITES 2002/03 TO 2006/07 FY
60
Count of URNO
50
40
30
Total
20
10
RICHMOND
MILDURA
NEWPORT
MELTON
MAIDSTONE
GLENROY
GLADSTONE PARK
FOOTSCRAY
THOMASTOWN
BRUNSWICK
ALTONA NORTH
ALTONA
LALOR
WARRNAMBOOL
KEILOR DOWNS
DEER PARK
BALLARAT
LAVERTON
COBURG
YARRAVILLE
ESSENDON
NORTHCOTE
SUNBURY
BENDIGO
HOPPERS CROSSING ALTONA MEADOWS
ST ALBANS
WERRIBEE
0
LOCALITY
It is highlighted in the above chart, the top four locations of CNS tumour patients treated in WCMICS public sites from 2002/03 to 2006/07FY at the time of admission are Werribee, St Albans, Hoppers Crossing and Northcote. The CNS tumour patients are travelling out of their local ICS locations to receive their cancer treatment and care
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9. CNS Patient Pathway This section reports on the findings of the service data, reflecting the CNS cancer patient pathway across the five points at the three hospital sites. The five points in the pathway are: •
Initial referral and diagnosis
•
Diagnosis confirmed to treatment planning
•
Treatment
•
Follow-up
•
Palliative treatment and referral to end-of-life care.
At each of the points in the pathway the relevant recommendations from the ideal pathway are highlighted. The data is then presented across all three sites. Gaps identified between current and ideal practice are presented site by site. Recommendations for addressing some of the identified gaps are outlined in this section. Some of these recommendations are site-specific and some are WCMICS strategies for improving the delivery of CNS cancer services.
9.0 Retrospective audit A retrospective audit of ten brain tumour patients was undertaken in March 2008 at PMCC, RMH and in May 2008 at SVH. Ten primary brain tumour patients treated between the years 2003 to 2007 were randomly selected at each hospital site. Their medical histories were audited to gain a further understanding of the brain tumour patient pathway, and to supplement and enrich the information received about current practice from stakeholder interviews. This information has then been used to compare the current service against the two published clinical guidelines for CNS cancer care (PMF and NICE guidelines). The key evidence-based recommendations are aligned to the five points in the pathway: • Initial referral and diagnosis • Diagnosis confirmed to treatment planning • Treatment • Follow-up • Supportive and Palliative care and referral to end-of-life care At the start of each pathway point the relevant recommendations from the ideal pathway are highlighted. The data is presented for the three WCMICS hospital sites; PMCC, RMH and SVH. This ideal pathway is for high-grade glioma patients only. Although it is likely to be a similar pathway for low grade glioma patients, these patients are generally younger, experience more frequent epileptic fits, have prolonged survival which includes later treatment, are followed-up for longer periods of time (years), and have more psycho-social issues. The appendices contain the ideal CNS cancer patient pathway, the data collection tool, individual hospital patient pathways from retrospective audit, a list of all stakeholders consulted during the course of the project and VAED high-level CNS data.
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9.1 Pathway point 1: Initial diagnosis and referral Flow chart 1
Ideal pathway
Symptomatic patient presents to GP
Initial tests
Suspicion of a brain tumour
GP referral to Neurosurgeon with tests / CT results
Specialist service
Further diagnostic tests
Surgery (biopsy and resection tumour) – refer to flow chart 3
Diagnosis communicated with patient and family
GP communication
Confirming Diagnosis
See Flow Chart 2 20
This section assesses reason for referral, the timeliness from referral to first clinic appointment and diagnosis as well as access to diagnosis tests. 9.1.1 Source of Referral Ideal pathway recommendations: a) All patients with suspected glioma should be seen by the GP who should conduct a history and neurological examination, provide a referral to brain CT within 24hours, with a MRI and specialist referral to be carried out if there are clinical concerns or arrangements made to go to emergency department (DHS 2006). b) Referrals by GP to secondary care or to Neuro-radiologist for imaging should aim for early access to imaging (CT & MRI) and biopsy/resection (NICE 2006).
Source of Referral
Sources of Referral
7 6 5 Num ber of Referrals
4 3 2 1 0 PMCC
RMH
SVH
Hospitals General Practitioner (GP)
Emergency Department (ED)
Other Hospitals
Internal hospital specialist
Unknow n
Figure 1
The overwhelming majority of referrals to PMCC, RMH and SVH were received from other hospitals. All ten PMCC patients were referred for treatment planning of radiotherapy and /or chemotherapy. Two of the seven PMCC other hospital referrals were from country Victoria. At RMH the source of seven referrals were from other hospitals. Four of the seven patients presented to the referring hospitals emergency departments. Two patients who presented to the emergency department at RMH did not have regular GP’s. Six of the ten patients audited at SVH had initially presented to their GP’s with symptoms. The GPs had arranged CT scans for the symptomatic patients before referring them to a hospital. The referring hospital then transferred care to SVH. Six other hospital referrals were initially GP referrals, noting four were from country Victoria.
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Interviews conducted with Clinicians at RMH and SVH indicated brain tumour patients present to Brain Tumour cancer services in three different ways: 1. Presents to GP:
- referred to hospital then emergency department - referred to surgeon: OPD - referred to surgeon: private rooms
2. Presents to A&E:
- referred by resident/ registrar - transferred from other hospital
3. Presents to OPD:
- ward admission - referred to the hospitals High-dependency ward
The majority of patients are admitted for further investigations such as tissue diagnosis. It was reported by Clinicians that “there seems to be a lack of education for GP’s in regards to brain tumour diagnosis”. “GP’s within the community don’t know what to do once a tumour is discovered”. “Patients are generally referred to the hospitals emergency department”. It has been stated by a consumer that “it would be beneficial to the whole community to increase the awareness of brain tumour symptoms (by initiatives) such as advertising campaigns”.
Recommendation 1: WCMICS to work with General Practice Victoria (GPV) to ensure distribution of …Guidelines for the management of patients with suspected brain tumours in the Western and Central Metropolitan region, to raise awareness for early and timely diagnosis and referral. Recommendation 2: Within the context of state-wide projects, a Brain tumour referral template will be developed and made available on the WCMCIS website for use by GPs and other referring clinicians, and will include the management of an urgent referral. 9.1.2 Imaging before and after Referral Ideal Pathway Recommendation: a) All patients with suspected glioma should receive a referral for brain CT scan within 24hours. MRI and specialist referral should be performed if there are clinical concerns (PMF). Table 2: CT or MRI before referral/ admission/ transfer PMCC RMH CT/ MRI before referral 9 6 No tests conducted 1 4
(n=10) SVH 9 1
At all hospital sites, patients present with previous imaging such as CT and MRI. 90% of PMCC and SVH brain tumour patients had received a CT/ MRI before presentation. These scans are usually used for treatment decisions unless the quality of the scan is an issue. 60% of patients audited at RMH received a CT and/ or MRI before presentation from either other hospital’s Accident & Emergency (A&E) departments or a community radiology service. The other 40% of patients referred to RMH received a CT and/ or MRI the same day of admission. It was not possible to access time between the initial presentation at a GP to the referral for CT/ MRI and onward referral to a specialist, as the information was not available from the patient’s medical records. Table 3: Days from Admission or OPD appointment to CT/MRI PMCC RMH Number (n) 10 10 < 24hrs (same day) N/A 10 > 24 hrs (days) N/A 0 Percentage receiving CT/MRI within 24hrs N/A 100%
SVH 10 5 5 50%
22
All PMCC patients had a CT/MRI scan completed prior to referral and therefore are not relevant to this section of analysis. All ten RMH patients had a CT and/or MRI scan within 24 hours from their admission or outpatient appointment. 50% of SVH received a CT and/ or MRI scan within 24 hours from their admission or out-patients appointment. The remaining 40% (n=4) received a CT and/ or MRI within 48 hours and 10% (n=1) received a CT and/ or MRI within 62 hours from their admission. During the structured interviews conducted with Clinicians, one stated “the standard pre-operative tests for the brain tumour patient are CT and MRI scans as well as routine blood tests. Other preoperative tests performed are chest x-ray, ECG and occasionally PET scans, visual function testing and EEG”. It was reported from another Clinician “when determining the patient’s diagnosis there is not one person assigned collect patients test results”. It was highlighted that a “Care Coordinator could assist with coordinating the patient’s results”, which would improve the efficiency of the service for the patient and clinician. “It is crucial for the patient to receive a CT and/ or MRI scan upon admission as there is an urgency for the neurosurgeon to assess the seriousness of the patient’s clinical status”. As consumer highlighted “it would be great if the patients could receive timely results and diagnosis as waiting for results is the most difficult process”.
Recommendation 3: A clinical protocol is developed and implemented to guide the timely ordering of tests/investigations. Recommendation 4: Protocols are developed and implemented for the scheduling test/investigations and collation of results. 9.1.3 Time from referral to presentation/OP clinic appointment Ideal pathway recommendation: a) If tests suggested suspected brain tumour an urgent referral should be made to a neurosurgeon. The GP should be informed of test results quickly, to allow early referral through local arrangements (NICE). b) If diagnosis is confirmed, patient should be referred to a neurosurgeon affiliated with or with access to an MD team (PMF). Table 4: Days from referral to first seen (via OP clinic and emergency department) PMCC RMH SVH Number (n) 10 10 10 Mean 6.7 5.2 1.7 Range 1-25 days 1-26 days 1-4 days No. of patients seen < 1week 6 (60%) 7 (70%) 10 (100%) Please note; PMCC patients are secondary consultation. All ten patients audited at SVH were seen by a neurosurgeon within four days of referral and were on average first seen within 1.7 days. At RMH patients were on average seen within 5.2 days of referral. This is a higher average compared to SVH, due to one patient being referred from an interstate hospital, which took 25 days from referral to being first seen in the neurosurgical out-patient clinic. Table 5: Admission pathway Number (n) Inpatient Outpatient A&E
PMCC 10 1 9 0
RMH 10 5 3 2
SVH 10 4 2 4
23
The data from PMCC is not comparable to RMH and SVH because the patients are being referred at a different point in their care pathway. 30% (n=3) from RMH and 20% (n=2) from SVH commence their clinical pathway via the outpatients department. 50% of RMH patients were directly admitted as an inpatient compared to 40% of SVH patients. 20% of RMH patients were admitted via A&E, this figure was double at SVH, where 40% were admitted via A&E.
Recommendation: Refer to Recommendation 1. 9.1.4 Initial presentation to Diagnosis Table 6: Initial presentation to Diagnosis RMH Number (n) 10 Mean 7.5 Range 0-12 days
(n=10) SVH 10 1.9 0-6 days
PMCC patients had previously received a diagnosis from their referring hospital/ specialist and were therefore excluded from this section. Included in this section is data from the audit, which included patients who have presented via emergency, outpatient’s clinic, or hospital transfer direct to the neurosurgical ward. The audit showed the average number of days from initial presentation to diagnosis is approximately 7.5 days at RMH, compared to 1.9 days at SVH. 30% of RMH patients received a diagnosis within one day, four patients received a diagnosed within four to five days and one patient received a diagnosis within 12 days from initial presentation. 60% of SVH patients received a diagnosis within one day, 20% received a diagnosis in two days and 10% of patients audited received a diagnosis in three days and six days.
Recommendation 5: Investigate outliers against and agreed maximum time from referral to diagnosis. Investigate action to feedback to referring clinicians i.e. GPs and other hospitals. 9.1.5 Information regarding Diagnosis Ideal Pathway recommendation: a) All patients should be given verbal and written information on all aspects of their diagnosis, treatment and care (NICE). b) Patients should be involved as active participant, in care planning and decision making, and wherever appropriate, so should their partners, family and carers. Ultimately, any treatment decision rests with the patient or designated person. This requires information and discussion in their preferred language and sensitive to their culture (PMF). It was stated by Clinicians that “patients and their family members are given brain tumour information upon diagnosis”. “Further brain tumour information can be found on the neurosurgical wards at RMH & SVH”. “PMCC has a designated resource and information area for all cancer patients and family”. “Information packs are also given on discharge”. It was noted all of the neurosurgical services have no formal procedure and/or protocol regarding the provision of patient information. It was stated by consumers that “it would have made the whole diagnosis easier if there was someone to assist with the medical language, information and a point of contact”.
24
It was recommended by the clinicians interviewed that “once patients have received their brain tumour diagnosis they should be given relevant and up-to-date information such as Cancer Council of Victoria (CCV) Brain and Spinal Cord Tumours Information booklets, CCV Support Group Information, Brain Tumour Australia and BrainLink website addresses”. It was suggested that if a part of the role for the Care Coordinator was available, part of their role could be to “disseminate brain tumour information to the patient whilst an inpatient and upon discharge, as well as providing their contact details as support for the patient”. Several of the consumers interviewed commented on the value of receiving brain tumour information pamphlets and booklets, as well as receiving community support services information. Whereas another consumer felt “the doctors need to improve the way they disseminate the diagnosis… they weren’t personable and understanding of the patient and family members feelings… they just seemed very matter of fact”.
Recommendation 6: A standardised WCMICS–wide approach to information provision for brain tumour patients and their carers to be developed and implemented. This may include: The use of currently published information from external sources e.g. CCV Standard information packs A range of information that can be tailored to the patient’s needs and point in their cancer journey.
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9.2 Pathway point 2: Initial diagnosis to Treatment Planning Flow chart 2
Ideal pathway
Investigations Investigations may include: • • • • •
C O O R D I N A T I O N O F
CT imaging MRI Contrast imaging Routine blood tests Chest x-ray ECG
Psychosocial screening / assessment and referral as needed
Multidisciplinary Team Meeting Confirm diagnosis and develop recommended management plan including supportive care issues. In the majority of cases surgery will occur first and then a multidisciplinary discussion.
C A R E Recommended treatment and supportive care plan discussed with patient and family
GP communication
See Flow Chart 3
26
This section discusses initial diagnosis to treatment planning and decisions to surgery. 9.2.1 Decision to Treat Ideal pathway recommendation: a) The time from initial presentation to neurosurgeon, to diagnosis and initial treatment decision should be no more than 2 weeks (PMF).
Table 7: Initial presentation to Decision to Treat PMCC Number 10 Mean (days) 10 Range 1-46 days
RMH 10 4.1 0-25 days
SVH 10 1.8 0-3 days
Please note; PMCC patients are not comparable to SVH & RMH patients due to presenting at the hospital sites at different points in their treatment pathway. An interstate patient was referred to RMH for assessment and treatment, from the initial out-patient appointment to decision to treat took 25 days. From this audit it can be seen that the time from initial presentation to the treatment decision takes an average of four days at RMH and two days at SVH. Both hospitals are meeting the recommended PMF guideline of less than two weeks between initial presentation and to decision to treat.
Recommendation 7: Neuro-oncology services to investigate outliers against the 2 week maximum time from referral to diagnosis, to identify and address reasons for treatment delays, with the acknowledgement if appropriate variations in care. 9.2.2 Decision to Treat to Surgery Ideal pathway recommendation: a) All patients should be considered for surgery (PMF). b) Surgery should be by the neurosurgeon and tissue diagnosis by the neuro-pathologist (PMF). For all 20 patients audited at RMH and SVH the initial treatment decision was surgery. Table 8: Decision to Treat to Surgery Number Mean Range
RMH 10 2.8 days 0-11 days
SVH 10 4.7 days 0-16 days
Please note: PMCC was excluded due to the decision to treat being for secondary treatment, and so the data is not comparable due to patient’s presenting at hospital sites at different points in their treatment pathway. At RMH the time from decision to treat to surgery was an average of 2.8 days, whereas at SVH it was an average of 4.7 days. One patient at RMH was discharged home and readmitted for elective surgery 11 days later. At SVH one patient was placed on the elective surgery list and surgery was performed 16 days from the decision to treat date. An analysis of the VAED information indicates that 60.5% of patients admitted with a diagnosis of a brain tumour have surgery. Calculations are based on total number of patients and total number of patients having surgery. This doesn’t take into consideration if the patient has had surgery at another hospital either private of public and only therefore indicates that they have been offered surgery as part of their treatment.
27
Chart 5: Episode 1 SurgeryFlag Surgical HospitalService (All) TOTAL NUMBER OF (UNIQUE) PATIENTS HAVING ATLEAST ONE SURGICAL PROCEDURE FOR PATIENTS WITH A CNS ICD DIAGNOSIS ACROSS WCMICS PUBLIC FACILITIES FOR 2002/03 TO 2006/07 FY
300
Count of URNO
250
200
150
Total
100
50
0 2002/03
2003/04
2004/05
2005/06
2006/07
fy
Chart 5 does not include those patients who are not referred into the Neuro-oncology service and who aren’t offered surgery. There is an assumption that all patients referred to a Neuro surgical unit will be considered for surgery.
Recommendation 8: Further investigation should be considered to quantify the numbers of patients who are offered surgical treatment. If appropriate, protocols can then be developed and implemented to ensure that all patients are considered by multidisciplinary teams for treatment.
28
9.2.3 Multidisciplinary team The ‘gold standard’ of Multidisciplinary care is a team who meets regularly to prospectively plan treatment and ongoing care for all patients within a tumour group; however, it is expected that different components of multidisciplinary care will be implemented depending on the setting, the location of the team and the number and type of cancer patients being treated (PMF, pg 6, 2006). An ideal multidisciplinary team comprises of all core disciplines, including allied health and psychosocial health practitioners. The patient’s GP is regarded as part of the team and there should be processes implemented to ensure effective communication with GP. Effective communication and referral linkages are made to all core and non-core team members (PMF, 2006, pg. 6).
Ideal Pathway Recommendation: The members of the multidisciplinary team who need to be involved in the initial treatment planning for brain tumour cancer patients are: - General Practitioner - Neurosurgeon - Neurologist - Neuro-pathologist - Medical oncologist or neuro-oncologist - Neuro-radiologist - Nurse - Palliative care service - Radiation oncologist - Social worker With access to: - Allied health services where appropriate (physiotherapy, speech pathology, occupational therapy, dietician and pharmacist) - Psycho-oncology service where appropriate (psychologist/ psychiatrist). The leader of the team should be - Before surgery: neurosurgeon - Post operatively: neurosurgeon or neuro-oncologist (PMF).
From the medical records audited, brain tumour patients were reviewed by neurosurgeons before surgery at RMH and SVH. Post-operatively the neurosurgeons and/ or medical oncologists and/ or radiation oncologists, reviewed the brain tumour patients at PMCC, RMH & SVH.
Recommendation 9: All services have access to a full range of professionals within the Neuro-oncology MDT. 9.2.4 Multidisciplinary treatment planning Ideal pathway recommendation: a) In general, involvement of the multidisciplinary team should occur immediately after tissue diagnosis (PMF). In the majority of cases, tissue is taken for diagnosis during definitive surgery, with a MDT discussion following this surgery. Post operative discussions should take place at the CNS MDT meetings to determine the patient’s treatment plan. At the time of conducting the audit, multidisciplinary team (MDT) meetings at RMH were in their planning stage and were yet to be established. However during the project a MDM had been set up. Therefore, there was no evidence of discussion of an MDM within the patient’s medical histories. SVH MDM operates on a monthly basis although there was no evidence of MDM recommendations in the patient’s medical histories. At PMCC only three patients had evidence in their medical histories of being discussed at a MD outpatient clinic.
29
In addition, a Clinician stated “No one or not one person is assigned to follow up treatment decisions from MDM. A Care Coordinator could do this”.
Recommendation 10: MDM are held regularly to facilitate prospective treatment planning for: New patients with complex needs Patients with a recurrence A treatment protocol will be established for new patients with simple needs Recommendation 11: All services should establish and implement processes and protocols to strengthen the documentation of the MD recommendations in the patient’s medical record, associated information systems, and for communication to the GP (this will occur via the WCMICS Strengthening the MD meeting program). Recommendation 12: All patients will have the MD recommendations discussed with them and a treatment plan agreed. There was evidence from the audit that patients are receiving MD treatment planning and care. MD treatment planning is being conducted immediately after surgery at both RMH and STV on the neurosurgical wards. The brain tumour patients were also seen by radiation oncologists and medical oncologists who discussed secondary treatment options. Ideal pathway recommendation: b) The patient should be referred to the radiation oncologist and medical oncologist while in hospital and preferably seen by them while in hospital. Definite follow-up appointments should be confirmed (PMF). Follow-up appointments were confirmed with patients upon discharge. There were also palliative care assessments and referrals, where applicable, for one patient at RMH and two patients at SVH. The Brain tumour patients audited at PMCC presented to the MD outpatients clinic and were reviewed by medical oncologist, radiation oncologist and neurosurgeon and a nurse coordinator who coordinates the care of the patients while receiving their treatment at PMCC. From the interviews Clinicians stated that “currently radiation oncologist do not attend CNS MDM”. “Treatment decisions are focused towards public treatment providers and it would be great if they included private treatment providers”. “It is important to include radiation oncology specialists from private and public services to the relevant MDM”. “There may need to be government input to fund the attendance of private radiation oncology specialists”.
Recommendation 13: The MDM should include a Radiation Oncologist as part of the MD team. Recommendation 14: The treatment plan should be scheduled and coordinated including follow-up care.
30
9.2.5 Access to Allied Health Ideal pathway recommendation: a) Patients should be referred to an allied health or rehabilitation physician to manage symptoms eg Physical impairment, seizure management etc. (PMF). The different types of allied health interventions being accessed by the brain tumour patients postsurgery are: • physiotherapy • occupational therapy • speech therapy • dietician • psycho-social • psycho-oncology • social worker Occupational therapy, physiotherapy and social worker were the most common recorded allied health interventions for the patient’s rehabilitation at all the hospital sites audited. It was stated by a Clinician that “if a brain tumour patient at PMCC needed a allied health or psychosocial intervention the Clinical Nurse Coordinator would refer the patient to the appropriate service”. It was also reported, “There is a great need for support from another social worker on the neurosurgical wards. The social worker is extremely busy and has difficulty providing the appropriate amount of time with every brain tumour patient and their family members”. Chart 10: Most common procedure codes for patients with a CNS Tumour ICD diagnosis across WCMICS public hospitals NUMBER OF PROCEDURE BY MOST COMMON ICD CODES (GROUPED INTO THREE CATEGORY :ALLIED HEALTH, SURGERY AND IMAGING) FOR PATIENTS WITH A CNS TUMOUR ICD DIAGNOSIS ACROSS WCMICS PUBLIC FACILITIES
7000
Sum of Total
6000
5000
4000 Total 3000
2000
1000
0 Allied Health
Surgery
Imaging
Category
As demonstrated in chart 10 allied health interventions are the most common procedure for patients with CNS tumour ICD diagnosis across the WCMICS public hospitals.
Recommendation 15: There is timely access to allied health professionals, where appropriate.
31
9.2.6 Communication to the GP Ideal pathway recommendation: a) There should be timely communication (before hospital discharge) to the general practitioner about the tissue diagnosis and the agreed treatment plan. This should be done via telephone and discharge summary (PMF). Table 9: Discharge summary including treatment plan PMCC Discharge plan 10
RMH 10
(n=10) SVH 10
All brain tumour patients audited at SVH had discharge summaries in their medical histories. These discharge summaries included the patient’s treatment plan. The discharge summaries were either faxed or sent via the mail to the patient’s initial referring GP and/ or neurosurgeons upon discharge. It was noted two of the discharge summaries were sent approximately one week after the patient was discharged. All patients audited at RMH had discharge summaries in their medical histories. These discharge summaries included the patient’s treatment plan. All brain tumour patients audited at PMCC had evidence of a treatment plan letter in their paper medical histories. The letter was either from a neurosurgeon, radiation oncologist and/ or radiation oncology registrar. Letters included the patient’s treatment plan and were sent to the patient’s referring neurosurgeon and/ or GP. Overall the audit showed the discharge summaries, including, treatment plans, were being sent in a timely manner to the patient’s GP and/ or neurosurgeon upon discharge, either via mail or fax. The exceptions were two at SVH that were sent approximately one week after the patient’s were discharged. There was no documentation stating the patient’s GP and/ or neurosurgeon received a telephone call, or any other form of communication, before hospital discharge. Communication to the patients GP and/or neurosurgeons could be delivered in a timely manner, with the assistance of a Care Coordinator. When consumers were asked what was the one thing that could be done that would make it easier for them, their family members and/or carer, their response was, “Improved administration and communications between hospital departments and GPs”.
Recommendation 16: The process for timely communication of critical information to referring GPs and specialists will be streamlined. This may include the development of: Neuro-oncology unit letterhead listing names of treating team members which will be used for all correspondence with referring doctors Electronic Templates for letters Electronic Templates for discharge summaries Electronic Templates for MDM recommendations/treatment plan Recommendation 17: The patient is given a named point of contact including contact details (with alternative if not available).
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9.3 Pathway point 3: Treatment
Flow chart 3
Ideal pathway
Treatment
Palliative
C O O R D I N A T I O N O F C A R E
Radical
See Flow Chart 5
Possibly incomplete resection
Further Surgery
Potential for further MD discussion
Radiotherapy
Alone or concurrent
Chemotherapy
Access to supportive care services during treatment
Follow-up
See Flow Chart 4
33
This section discusses the length of time from the first outpatient appointment to treatment commencement and the length of time from decision to treat to the commencement of treatment. This section also highlights the different types of treatments received by the brain tumour patients at each of the hospitals. 9.3.1 Days to Treatment Commencement Ideal pathway recommendation: a) All patients should be considered for surgery and/ or radiotherapy and/ or chemotherapy (PMF).
Table10: Time from decision to treat to Treatment PMCC Number 10 Mean 10.4 days Range 0-23
RMH 4 41 days 0-55 days
SVH 8 39 days 0-65 days
Table 11: Time from first outpatient appointment to Treatment PMCC RMH Number 10 4 Mean 17.3 days 18.25 days Range 0-48 days 0-37 days
SVH 8 12.8 days 0-30 days
It was noted from the audits conducted that two patients at SVH and four patients at RMH were referred to their local community medical oncologists and/or radiation oncologist upon discharge. There was no evidence of any form of communication from these community cancer treatment providers stating that the brain tumour patients received any ongoing cancer treatment postsurgery. Also, at RMH a patient had died post-discharge and another patient was not suitable for further treatment such as radiation and/ or chemotherapy. This resulted in only four patients at RMH and eight patients at SVH receiving further treatment post-surgery. From the structured interviews with clinicians, they reported a variable degree of communications between the hospital services and community providers. It was stated “A verbal referral via telephone or at MDM often takes place” “Or a referral letter is sent to the secondary treatment provider”. “Communicating treatment plans to country hospitals can be an issue”. “If a care coordinator position was in place it would improve communications between the service providers”. It is anticipated that part of a Care Coordinator role would be to actively seek information about the CNS patient’s health status, who is providing treatments and what treatment is being provided etc. There are no Care Coordinators at RMH and SVH Neurosurgical services. Also a consumer stated “the most difficult part of treatment was access to car parking”...“the cost, finding a car park and then running late for the appointment cause unnecessary distress”. This information does not include those patients who are not referred into the Neuro-oncology service and who aren’t offered surgery. There is an assumption that all patients referred to a Neuro surgical unit will be considered for surgery.
Recommendation 18: Further investigation should be considered to quantify the numbers of patients who are offered treatment. If appropriate, protocols can then be developed and implemented to ensure that all patients are considered by multidisciplinary team members.
34
9.3.2 Types of Treatment Table 12 indicated the first type of treatment the brain tumour patients received at each hospital site. Table 12: First treatment types by site PMCC Number (n) 10 Surgery 1 Radiotherapy 6 Chemotherapy 0 Concurrent 3 Chemotherapy
RMH 10 10 0 0 0
SVH 10 10 0 0 0
All patients audited at both SVH and RMH received surgery as their first type of treatment. When day surgery was performed at PMCC, the procedure was the insertion of an infusion port for chemotherapy. The patient was discharged back to the country GP, once the day procedure was completed. Six of the brain tumour patients at PMCC received radiotherapy and three patients received concurrent chemotherapy as there first type of treatments at the hospital site.
Figure 2 indicates the second type of treatment the brain tumour patients received at each hospital site.
Second Treatment Type 4
3 Num ber 2 of Patiens
1
0 PMCC
RMH
SVH
Hospitals Further Surgery (2nd surgery)
Radiotherapy
Chemotherapy
Palliative chemotherapy
Referral to medical oncologist
Referral to community palliative care
Referral to other hospital unit
No further treatment at hospital site Figure 2
The audit showed that brain tumour patients received a number of different types of secondary treatments the brain tumour patient can receive. At SVH four patients received further surgery; resection of the tumour. Another four patients were referred to their local medical oncologists and two received chemotherapy at SVH. In contrast RMH one patient received further surgery (craniotomy for excision of glioblastoma) and two patients received chemotherapy. Four patients were referred to their local medical oncologist, two patients were referred to community palliative care and one patient received no further treatment.
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At PMCC, one patient received radiotherapy and one patient received chemotherapy as their secondary treatment. Two patients were referred to community palliative care and two were referred to other hospital units. Four patients received no further treatment.
Chart 11: Most common procedure codes for all same day admission for patients with malignant CNS ICD codes at RMH and SVH for 2002/03 to 2006/07 FY. NUMBER OF PROCEDURES BY MOST COMMON ICD PROCEDURE CODES IN ALL SAME DAY ADMISSIONS FOR PATIENTS WITH MALIGNANT CNS ICD CODES AT RMH AND ST VINCENTS FOR 2002/03 TO 2006/07 FY
25
Count of URNO
20
15 Total 10
5
0 1391500 1391800 9619900 3900000 9090100 9219300 1370602 1370603 3970900 3970902 4080300 9218400 9251429 9251499 9251599 Chemotherapy
Others Category OperCode
Note: Please refer to Appendix 6, page 10 for ICD procedure codes. Chart 11 shows chemotherapy is the most common procedure for all same day admission patients at RMH and SVH between the July 2002 and June 2007.
9.3.3 Neurosurgical review post-surgery Ideal pathway recommendation: a) Follow-up review by the neurosurgeon should occur four to nine weeks after surgery (DHS, 2006). Table 14: Weeks from Surgery to 1st Follow-up by Neurosurgeon RMH SVH Number 5 7 Mean 5.9 weeks 6 weeks Range 0-8 weeks 0-9 weeks Please note PMCC was excluded due to surgery not being performed at PMCC. At RMH, five patients had evidence of receiving a neurosurgical reviews post surgery. From the small sample size patients are being reviewed approximately 5.9 weeks post surgery. The other five patients were either transferred back to their referring hospital, referred to their specialist or referred to palliative care with notification of death for one CNS patient four weeks post-surgery. At SVH, seven patients received neurosurgical reviews within six weeks post-surgery. The three patients who had no record of receiving a neurosurgical review also had no record of further communications once discharged back to their country communities.
From this small audit the follow up occurs with the prescribed timescale, therefore no specific recommendation is required. 36
9.4 Pathway point 4: Follow-up Care
Flow chart 4
Ideal pathway
Post treatment appointment
Development of follow-up plan
C O O R D I N A T I O N
GP communication
Access to supportive care services following treatment
Routine follow-up as per agreed plan
O F C A R E
New symptoms suggestive of recurrence
Yes No
Follow-up ongoing
See Flow Chart 5 37
9.4.1 Frequency of Follow-up Ideal pathway recommendation: a) MRI should be performed generally 1-3 months after radiotherapy, depending on when radiotherapy commences and clinical circumstances; then at 3-6 months intervals, depending on when radiotherapy commences and subsequent deterioration (DHS, 2006).
Table 15: Number of patients receiving MRI within recommended time frames PMCC RMH SVH Number 8 4 7 1-3 months 6 4 7 3-6 months 4 3 5 6-9 months 1 1 7 From the eight patients audited at PMCC, only six received a MRI within the recommended time frame (1-3 months post radiotherapy). All four patients at RMH and seven patients at SVH received their first MRI within the recommended time frame. At 3-6 months the number of patients receiving a MRI within the recommended time frame had decreased. At 6-9 months the number of patients receiving a MRI within the recommended time frames had decreased even further at PMCC and RMH. At SVH it was recorded all seven patients received a MRI at 6-9months. The cause of the decrease in numbers of patients receiving MRI’s 69months may have been due to the patient’s health deteriorating. There were also a number of referrals to palliative care services and patients being discharge to other health care services at 69months post secondary treatment. Table 16: Months from surgery to next MRI RMH Number 4 Mean 2.75 months Range 1-3 months
SVH 7 2.57 months 1-3 months
Please note PMCC patients were excluded because neurosurgery is not performed at PMCC. Table 17: Months from first MRI post surgery to Second MRI PMCC RMH Number 5 3 Mean 2.4 months 3 months Range 0-7 months 3-6 months
SVH 7 3.28 months 3-7months
Table 18: Months from second MRI post surgery to Third MRI PMCC RMH Number 2 1 Mean 2.5 months 6 months Range 0-4 months 6-9 months
SVH 7 2 months 2-9months
The audit showed PMCC referred brain tumour patients for a CT scan more often than a MRI scan during the patient’s follow-up.
If patients have had their MRI scan at another organisation, public or private, this would not necessarily be recorded. Therefore the data presented may be an underestimation of follow up MRI.
Recommendation 19: Further investigate the reasons MRIs are not being performed i.e. clinical or administrative, and develop and implement protocols for the scheduling and actioning the results. 9.4.2 Communication
38
Ideal pathway recommendation: a) Communication to the GP should include information about every hospital visit, specialist appointment and results of recent tests (DHS, 2006).
The audit showed that communication within the hospital and from other health providers was often insufficient to provide optimal care. Examples included: tests results aren’t often shared with the GP and no acknowledgement of receipt of referrals to secondary care providers, eg radiotherapy referral. It was acknowledged that information may be disseminated verbally and not documented and all hospitals have multidisciplinary clinics that run concurrently. Verbal communication may be favoured because one Clinician reported “often urgent decisions need to be made”. It was also stated from the interviews “there is a lack of communication once the patient has been transferred back to the country. There is a need for someone to follow up discharged patients previously operated on, to receive an update of their health status. Then the patients could be discussed at MDT meetings. This could be part of the Care Coordinator role”.
Recommendation: Refer to Recommendations 16 and 17.
39
9.5 Pathway point 5: Treatment of Recurrence and End of Life Care Flow Chart 5
Ideal pathway
Newly diagnosed patient or one with recurrence and NOT a candidate for radical treatment
Patient may gain short-term survival benefit from active palliative treatment and is well enough to manage this.
S U P P O R T I V E
GP communication
Yes
No
May gain benefit from palliative treatment to relieve symptoms
Yes
C A R E
No
Radiotherapy
And /
or
Chemotherapy
Surgery
Access to Supportive Care services during and following treatment including: • good symptom management • social and practical support • psychological needs
Palliative care services
In patient consultancy service
GP
In patient palliative care bed
Community based palliative care
40
9.5.1 Recurrence Ideal pathway recommendation: a) Symptoms suggestive of recurrence should be investigated with MRI (DHS, 2006). b) Treatment will depend on the location and extent of the recurrence, and on previous management. Treatment may include surgery, radiotherapy and/ or chemotherapy (DHS, 2006). c) All patients should be offered participation in a clinical trial where available at recurrence and initial treatment planning (adapted from DHS, 2006). Treatment will depend on the location and extent of the recurrence, and on previous management (DHS, 2006:16). From the hospital audit, the treatment patients received for recurrence included surgery, radiotherapy, seizure control, physiotherapy, occupational therapy and referral to community palliative care. A Clinician reported “Treatment options and plans should be discussed with patients and decisions made jointly”. “Patients should also be offered the opportunity to participate in clinical trials”. The audit showed no evidence of patients participating in clinical trials at any of the hospital sites. As stated by another Clinician “a very low number of CNS patients are currently participating in clinical trials. It should be offered to all patients where applicable”.
Recommendation 20: Protocols are developed and implemented to ensure patients with a suggestion of a recurrence have a MRI and the results reviewed. Recommendation 21: Protocols are developed and implemented so that all patients are considered for clinical trials as appropriate. 9.5.2 Supportive care Supportive care may be required to support people with cancer and their family members and/or carers. Supportive care may include: • self-help and support • information needs (diagnosis, prognosis, types of treatment) • psychological support (anxiety & distress) • symptom control • social support (practical supports, carer needs) • rehabilitation (physical needs, pain, fatigue) • spiritual support (addressing hopelessness & despair) • palliative care and bereavement care (unresolved symptoms, complex psychosocial, end of life issues) (DHS, 2006: 7)
Ideal pathway recommendation: a) Supportive care is required throughout the diagnostic, treatment and follow-up phases of care (DHS, 2006). Table 19: Evidence of Supportive Care Number Supportive Care screening tool used Allied Health assessment Palliative Care referral
PMCC 10 1 4 5
RMH 10 0 10 4
STV 10 0 4 3
From the retrospective audits conducted at PMCC, RMH and SVH there was evidence of only PMCC using a supportive care screening tool for one of their brain tumour cancer patients’. WCMICS part funded the development of the scannable version of the PMCC Supportive Needs Screening Tool which can be included in their electronic patient medical record.
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As stated by a Clinician, “Supportive care and referral to palliative care could be better defined as there is no set method within the hospital”. It was suggested that patients with brain and CNS tumours, in particular, have palliative care service needs. Closer integration between specialist palliative care and Neuro-oncology services throughout the patient’s illness can help smooth transition from more active treatment to palliative care, ensuring access to specialist palliative care services at the right point in the patient pathway (NICE, 2006:120). A consumer mentioned “it would have been more helpful for the patient and family to receive better support from the hospital”. Another consumer said “once I completed treatment I felt a little
depressed, it was like ‘what do I do now?’”. “No one was there to provide support once treatment was completed”.
It was stated by a Clinician that “all new patients should see a social worker for supportive care”. It was identified there are no brain tumour support groups particularly for young GBM patients within the community. As reported by a consumer “there are not enough Brain Tumour support groups and services”. The level of unmet supportive care needs for Brain Tumour patients is obvious by the above statements. A dedicated Care Coordinator could provide health-care guidance and emotional support to patients and their families by providing a contact telephone number, timely referral, promotion of self-care, dissemination of information and education and psychosocial support. A Support Group could also provide a therapeutic forum for patients and their family members. An organisation approach to the selection of a supportive care screening tool would eliminate the implementation of ‘any’ supportive care screening tool. It is driven by the hospitals and consulted with the stakeholders. DHS Supportive Care Resource Suite which, when released, will aid this hospital approach with the selection of a suitable supportive care screening tool.
Recommendation 22: Supportive Care screening is introduced or strengthened across Neuro- oncology services. This should include: The development of clear screening protocols The development of internal and external referral pathways Implementation of re-screening at priority points in the pathway 9.5.3 Coordination of care Patients with brain tumours have complex physical, cognitive, emotional and psycho-social deficits and have high needs for assistance in their lives from diagnosis to death. These patients experience a rapid decline in functioning with an average survival period of twelve months. Hence, there is a narrow window of opportunity for services which will assist the patient and family, and therefore imperative that this service provision is timely, streamlined and coordinated. The Government policy document Linking Cancer Care – A guide for implementing coordinated cancer care (DHS, 2007:2) lists the benefits of improving patient care coordination as improving patient outcomes, increased referral to appropriate services and patient compliance, better communication between providers and decrease in duplication and costs. Ideal pathway recommendation: a) Care Coordinator to manage patient’s journey through acute care and into the community including supportive care screening, management of referrals/ diagnostics and complex treatments schedules (adapted from DHS, 2006). b) The Care Coordinator is the main point of contact for the GP, patient and their family members and/ or carers (NICE, 2006). Table 20: Care coordination per site Nurse Care Coordinator MDT meetings MD clinics Weekly MD ward rounds GP communication
PMCC Yes No Yes N/A letters
RMH No Yes Yes Yes letter
SVH No Yes Yes Yes letter
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PMCC is the only hospital site with a dedicated Clinician Nurse Coordinator. Unfortunately RMH and SVH do not have a Care Coordinator for their Brain Tumour cancer patients. As stated by a consumer “coordination of care is needed and a must”. From the patient’s experience “once discharged from oncology and neurology departments it was not clear which department would manage my case. I had to work it out myself. I eventually left the hospital to go to another due to frustration of being told I needed a GP referral each time I went to the clinic that was managing my case. I had to find out what to do next regarding treatment and care of my disease.” Again this demonstrates a lack of communication and coordination between hospital departments and the patient’s GP. It was stated by a consumer “I was told to go to ED if any sudden health problem arise”. “No contact number or hospital staff members name was offered”. “I would have felt safer and less anxious if I had a name and number of someone who I could call in case of an emergency”.
10. Care coordinator role Ideal pathway recommendation: a) Systems are established to ensure efficient and effective processes for treatment, care and service delivery including appointment scheduling, availability of test results, communication processes, treatment and referral pathways (DHS Cancer Quality Framework, 2007). b) Neuroscience MDT will require one full-time MDT coordinator – an administrative post responsible for coordinating patient registration with MDT and data collection (NICE, 2006). WCMICS CNS services have varying access to care coordination for their patients. PMCC has a dedicated part-time Clinical Nurse Coordinator for their Neuro-oncology service; however, this is for the Radiation Therapy portion of the treatment only. RMH has a Neurosurgery Discharge Planning Nurse who takes on some aspects of patient care coordination. SVH does not have a care coordinator or similar for their neurosurgical service. The British Journal of Neuroscience Nursing Journal reports ‘specialist nurses would provide the necessary time to ensure that all newly diagnosed and/ or newly treated patients receive the correct care and advice about their condition, and guidance on what to look out for in the future’ (2007: 305). A consumer said “the service needs a care coordinator who can organise what is needed before patient’s out-patient clinic or oncology appointments so the appropriate scans/ blood results are on hand for the specialists”. The role of a care coordinator could include the management of referrals, provision of direct patient care (including being a phone contact) and information provider for both patients and GPs with enquiries, and liaison with consultants to provide a coordinated approach for patients throughout the continuum of care, including outpatients, surgery, discharge, MDT and follow-up. From the interviews conducted with clinicians there seemed to be similar themes of the role of the care coordinator. These were: •
The care coordinator role should be a full time position.
•
Care coordinator would provide patients with information and resources on cancer, brain tumours, treatments, useful websites and support services.
•
The care coordinator would be involved with the CNS patient from beginning to end. The patient is able to identify with the care coordinator and they are the contact person for the patient and hospital service.
•
Care Coordinator to provide contact details to patient and family members and/or carers.
43
•
•
Care coordinator would work within the inpatient and outpatient units by arranging appointments; outpatient appointments and follow-up appointments. Care coordinator should be a core member of the CNS MDT and deliver appropriate diagnostic investigations in a timely and efficient manner.
•
Attend MDT meeting and coordinate relevant patient information.
•
Care Coordinator to document discussion and decisions of treatment and care of patients at MDT meeting and to file in the appropriate medical histories.
•
Care coordinators should be able to make appropriate referrals to hospital services as well as following up treatment decisions as discussed at MDT meetings.
•
The care coordinator would provide data entry and collection assistance.
•
Understanding of medical terminology, cancer knowledge and oncology.
•
The care coordinator will assess the patient for psycho-social and/ or palliative care intervention and refer the patient and make the necessary arrangements.
•
Overall, the care coordinator would enhance the patient journey.
Recommendation 23: A Care Coordinator to be available in Neuro–oncology services to coordinate the complex patient care across the CNS Brain Tumour patient pathway both within the unit and in liaison with the primary/community/palliative care services following discharge.
11. Summary of Service gaps At all sites, a range of gaps have been identified between current and ideal CNS brain tumour cancer care. Some of these gaps are consistent across sites. In addition, site-specific areas in which gaps between current and ideal practice exist. Potential areas for improvement across all sites include: •
Communication between neurosurgical teams and GPs in terms of timeliness of communication from the clinics to the GP
•
Timely access to CT & MRI results
•
MDT meetings at all sites
•
Psychosocial and supportive care screening and dissemination of findings to team members
•
Standardisation of the Nurse Coordinator role across WCMICS hospital sites
In addition, some key site-specific gaps that were identified include: Peter MacCallum Cancer Centre • There is no MD team meeting. • The dedicated Specialist Nurse or Care Coordinator role for CNS brain tumour cancer patients only works part-time. Royal Melbourne Hospital •
A local Radiation oncologist is not part of the MD team or attends meetings regularly.
•
There is no dedicated Specialist Nurse or Care Coordinator role for CNS brain tumour cancer patients.
St Vincent’s Health •
A local Radiation-oncologist is part of the MD team and does attend the meetings regularly.
•
There is no dedicated Specialist Nurse or Care Coordinator role for CNS brain tumour cancer patients
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12. The Next Steps The way forward to implementation of the service improvement recommendations will be as follows: 1.
CNS tumour group to endorse report findings and discuss implementation plan of recommendations at relevant hospital sites.
2.
WCMICS Clinical Management Advisory Committee and CEO/Delegates Governance Group to endorse report findings and discuss implementation plan of recommendations at relevant hospital sites.
2.
WCMICS to work collaboratively with the CEO/Delegates Governance Group and CNS tumour group regarding: - Implementation plan and the way forward. - Different solutions for different sites.
3.
Further WCMICS funding be allocated to services to facilitate implementation of the agreed service improvements. These could consist of: - Facilitating service improvements. - Providing additional resources for sustaining current clinical roles and additional roles. - Monitor and review improvements.
4.
A copy of this report will be forwarded to DHS.
5.
To meet with individual stakeholders at each of the hospital sites to discuss moving the relevant recommendations forward and implementing.
6.
WCMICS directorate to support the relevant hospital sites with the implementation of the service improvement recommendations.
The WCMICS Brain tumour services and the CNS Tumour Group to establish review processes and evaluation of the service improvements implemented at each of the hospital sites. This will enable progress, identify and address challenges and changes as well as setting future goals.
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13. Appendices Appendix 1 – List of Abbreviations……………………………………………………………………………………………………….47 Appendix 2 – Ideal CNS Patient Pathway…………………………………………………………………………………………....48 Appendix 3 – List of Stakeholders Interviewed……………………………………………………………………………………53 Appendix 4 – VAED data report: additional high-level CNS data………………………………………………………..54 Appendix 5 – Retrospective Data Collection Tool…………………………………………………………………………………82
46
Appendix 1: List of Abbreviations Abbreviation CNS CT DHS ED GBM GP GPV ICD ICS MD MDM MDT MRI NICE PET PMCC PMF RMH SVH VAED WCMICS
Descriptors Central Nervous System Computed Tomography Department of Human Resources Emergency Department Glioblastoma Multiforme General Practice General Practice Victoria International Classification of Disease Integrated Cancer Service Multidisciplinary Multidisciplinary Meeting Multidisciplinary Team Magnetic Resonance Imaging National Institute for Clinical Excellence Guidance Positron Emission Tomography Peter MacCallum Cancer Centre Patient Management Framework Royal Melbourne Hospital St Vincent’s Hospital Victoria Admitted Episode Dataset Western & Central Melbourne Integrated Cancer Service
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WCMICS ideal pathway for patients with CNS: malignant glioma.
Flow chart 1: Initial referral and diagnosis
Ideal pathway
Recommendations
Symptomatic patient presents to GP
Initial tests
Suspicion of a brain tumour
1. GP Consultation a) For significant symptoms such as severe headache, neurological deficit or seizure, the patient should be seen within 24 hours or arrangement made to go to ED. For milder nonspecific symptoms, the patient should be seen within days or weeks (DHS, 2006). b) Brain CT scan within 24 hours of request and results should be received with the same 24 hours within primary care (DHS, 2006). c) Patient told not to drive until further notice (DHS, 2006).
GP referral to Neurosurgeon with tests / CT results 2. Referral time Patients with clinical evidence of a brain tumour should be referred to a neurosurgeon and appointment confirmed within 24hours (with a request for urgent assessment) (DHS, 2006). This may include direct referral to an Emergency department of a hospital with a Neurosurgery department.
Specialist service
3. Specialist service a) All patients with suspected brain tumours should be referred to a Neurosurgeon, with expertise in management of brain tumours (DHS, 2006). Further diagnostic tests
b) If diagnosis confirmed, patient should be referred to neurosurgeon affiliated with or with access to a MD team (DHS, 2006). 4. Test results a) All results should be available for MD discussion (DHS, 2006).
Surgery (biopsy and resection tumour)
b) If tests suggest brain tumour urgent referral to neurosurgeon (NICE, 2006).
– refer to flow chart 3 5. Patient communication
Diagnosis communicated with patient and family
a) Patients should be involved as active participants in care planning and decision making, and wherever appropriate so should their partners, families and carers. Ultimately, any treatment decision rests with the patient or designated person. This requires information and discussion in their preferred language and sensitive to their culture (DHS, 2006). b) All patients should be given verbal and written information on all aspects of their diagnosis, treatment and care (NICE, 2006).
6. Care Coordination GP communication
Care co-ordinator to manage patient’s journey through acute care and into the community including supportive care screening, management of referrals/diagnostics and complex treatments schedules (Adopted from DHS, 2006).
Confirming Diagnosis 7. GP communication
See Flow Chart 2
a) The specialist should provide timely communication to GP about consultation (DHS, 2006) b) The GP should be informed quickly to allow early referral through local arrangements (NICE, 2006).
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WCMICS ideal pathway for patients with CNS: malignant glioma. Ideal pathway
Flow chart 2: Investigations to treatment plan
Recommendations
8. Confirming Diagnosis Investigations Investigations may include: • • • • •
C O O R D I N A T I O N O F
CT imaging MRI Contrast imaging Routine blood tests Chest x-ray ECG
a) Every network should have access to CT and MRI (NICE, 2006). b) The tissue diagnosis should occur at the time of surgery (DHS, 2006). c) Surgery should be by the Neurosurgeon and Tissue diagnosis should be by the Neuro-pathologist (DHS, 2006). d) Surgery should occur at a hospital with specialist neurosurgical facilities (adopted from DHS, 2006).
9. Psychosocial screening / assessment A routine or systematic approach will help to identify people at high risk of psychological or support distress (DHS, 2006)
Psychosocial screening / assessment and referral as needed
b) Should have timely access to supportive care for patients, their relatives and carers (NICE, 2006).
10. Multidisciplinary team a) For initial diagnosis the MDT should include the Neurosurgeon, Medical oncologist, Neurologist, Neuropathologist, Radiation oncologist, Nurse, Neuroradiologist, Social worker, with access to Allied health services, Palliative care and Psycho-oncology services (DHS, 2006). b) Neuroscience MDT will require one full-time MDT coordinator – an administrative post responsible for coordinating patient registration with MDT and data collection (NICE, 2006). Multidisciplinary Team Meeting Confirm diagnosis and develop recommended management plan including supportive care issues.
c) For recurrence the MDT includes the lead specialist plus Rehabilitation team dependent on recurrence site. GP and Palliative care participation is essential (DHS, 2006).
In the majority of cases surgery will occur first and then a multidisciplinary discussion. 11. Multidisciplinary meeting
C A R E
a) All patients should be discussed at CNS multidisciplinary meeting (NICE), immediately after tissue diagnosis (DHS, 2006). b) Care coordinator to follow-up patients’ treatment decisions discussed at MDT meetings (adopted from DHS, 2006) Recommended treatment and supportive care plan discussed with patient and family
12. Patient communication a) The Neurosurgeon ensures adequate discussion with patient and family of the diagnosis and treatment options, possible outcomes, psychosocial supports for pts and family and access to allied health services (DHS, 2006). b) Treatment options and plans should be discussed with patient and decisions made jointly as well as participation offered in a clinical trial, where appropriate (NICE 2006).
GP communication 13. Coordination of care a) Following multidisciplinary planning, there should be timely communication with the GP about the agreed treatment plan (DHS, 2006).
See Flow Chart 3
b) The Care coordinator should provide continuing support to patients, relatives and carers, and facilitate communication (NICE, 2006).
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WCMICS ideal pathway for patients with CNS: malignant glioma.
Flow chart 3: Treatment
Ideal pathway
Recommendations 14. Time to treatment
Treatment
a) The time from initial presentation to neurosurgeon, to diagnosis and initial treatment decision should be no more than 2 weeks (DHS, 2006).
Palliative
Radical 15. Surgery
C O O R D I N A T I O N O F C A R E
In the majority of cases surgery will occur first and then a multidisciplinary discussion. a) All patients should be considered for surgery (DHS, 2006). b) Identify whether the patients needs urgent surgical intervention or elective surgery and to decide on management plan and if patient is fit for any intervention (NICE, 2006). c) A post-operative MRI within 48hous of surgery is desirable if resection is performed (DHS, 2006).
See Flow Chart 5
Possibly incomplete resection 16. Radiotherapy
Further Surgery
Potential for further MD discussion
a) All patients should be considered for radiotherapy and/ or concomitant chemotherapy (DHS, 2006). b) Facilities available with the ability to treat patients within three weeks of surgery, dual modality LINACS, CT planning facilities and treatment planning system (DHS, 2006). c) Radical radiotherapy may be considered following confirmed histopathological diagnosis (NICE, 2006).
17. Chemotherapy a) A multidisciplinary team should consider all patients for chemotherapy (DHS & NICE, 2006).
Radiotherapy
Alone or concurrent
Chemotherapy
Access to supportive care services during treatment
Follow-up
18. Clinical Trial a) Clinical trial involvement is considered for all eligible patients who will be undergoing cancer treatment (DHS, 2006).
19. Coordination of care a) Systems are established to ensure efficient and effective processes for treatment, care and service delivery including appointment scheduling, availability of test results, communication processes, treatment and referral pathways (DHS Cancer Quality Framework, 2007). b) The Nurse care coordinator is the main point of contact for GP, patient, their relatives & carers (NICE, 2006).
20. Supportive care a) Patients should receive individualist information about their care (DHS Cancer Quality Framework, 2007). b) There should be regular screening for anxiety and depression (DHS, 2006); as early referral to psycho-oncology improves quality of life (NICE, 2006). c) Referral to social worker or psychologist for support needs (DHS, 2006) d) Referral to allied health or rehab physician to manage symptoms eg physical impairment, seizure management etc (DHS, 2006).
See Flow Chart 4
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WCMICS ideal pathway for patients with CNS: malignant glioma. Ideal pathway
Recommendations
Post treatment appointment
21. Follow-up a) On completion of treatment patients should have follow-up as close to home as possible, with a member of MDT in an outpatient clinic to discuss the plan (NICE, 2006).
Development of follow-up plan
C O O R D I N A T I O N
Flow chart 4: Follow-up
b) The Neurosurgeon or medical oncologist should be in charge of follow-up with involvement of other MD team members as appropriate (DHS, 2006). c) MRI should be performed generally one to three months after radiotherapy, depending on when radiotherapy commences and clinical circumstances; then at three-six month intervals, depending on clinical circumstances and subsequent deterioration (DHS, 2006).
GP communication d) Anticonvulsant use should be reviewed by the neurologist or neuro-oncologist, particularly if there are ongoing seizures. Anticonvulsant levels should be regularly monitored and cessation of therapy considered (DHS, 2006) Access to supportive care services following treatment
e) It is important to identify a key worker (care coordinator) who is the main point of contact for GP, patient, their relatives and carers (NICE, 2006). f) Follow-up by the neurosurgeon should occur four-nine weeks after surgery (DHS, 2006).
Routine follow-up as per agreed plan 22. Individualised follow-up plan
O F C A R E
a) Follow-up investigations need to be agreed between the lead clinician, GP and the patient, with an agreed plan documented (DHS, 2006).
23. General practitioners (GP) New symptoms suggestive of recurrence
a) The GP has a key role in coordination of follow-up and in managing day-to-day issues (DHS, 2006).
24. Supportive care
Yes No
a) There should be access to specialist neuropsychology and neuropsychiatry services and access to specialist healthcare professional as appropriate for any other problems such as, epilepsy, headaches, functional loss (NICE, 2006).
25. Treatment and Plan for Recurrence Follow-up ongoing
a) Symptoms suggestive of recurrence should be investigated with MRI (PMF). b) The MDT is responsible for formulating recurrence management plans (NICE, 2006). GP & Palliative Care services participation is essential (DHS, 2006). c) Treatment will depend on the location and extent of recurrence, and on previous management Treatment may include surgery, radiotherapy and /or chemotherapy (DHS, 2006).
See Flow Chart 5
d) All patients should be offered participation in a clinical trial where available at recurrence (DHS, 2006.)
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WCMICS ideal pathway for patients with CNS: malignant glioma.
Ideal pathway
Flow chart 5: Palliative treatment and end-of-life care
Recommendations
Newly diagnosed patient or one with recurrence and NOT a candidate for radical treatment
26. Patient communication a) Health professionals should discuss the use of complementary therapies with patients’ and help identify possible side effects or interactions with conventional treatments (NICE).
Patient may gain short-term survival benefit from active palliative treatment and is well enough to manage this.
b) Ensure specific information services refer to CCV (DHS, 2006) and Brain Tumour Australia & BrainLink (WCMICS).
27. Palliative treatment
S U P P O R T I V E
GP communication
Yes
No
a) General practitioner and palliative care participation is essential as part of MD team (DHS, 2006). b) Palliative care to be provided by general & specialist palliative care providers (NICE, 2006).
28. Symptom control May gain benefit from palliative treatment to relieve symptoms
a) Patients need to be provided information and alerted to symptoms of seizures and how to access medical support (DHS, 2006). c) Dysphasia and swallowing difficulties; may need referral to speech pathologist (DHS, 2006).
Yes
No d) There should be immediate access to specialist equipment as necessary for rehabilitation including physio and OT (DHS, 2006). Radiotherapy
C A R E
And /
or
Chemotherapy 29. Supportive care a) There should be regular screening for anxiety and depression (DHS, 2006). b) There should be regular assessment of the psychological needs of patients and monitoring of their cognitive and personality changes (NICE, 2006).
Surgery
c) The risk of depression can be increased by loss of independence / poor performance status and poor prognosis. Referral to physiotherapy or OT may restore some level of independence (DHS, 2006).
Access to Supportive Care services during and following treatment including: • good symptom management • social and practical support • psychological needs
Palliative care services
In patient consultancy service
d) Identification of funding support may be necessary to assist with equipment needs –referral to social worker (DHS, 2006)
30. Palliative care services
GP
In patient palliative care bed
a) The MD team should include the general practitioner, medical oncologist, radiation oncologist, nurses, allied health, palliative care and pastoral care service (DHS, 2006).
Community based palliative care
b) Patient care within community based and inpatient palliative care services needs to include consideration for special needs relating to neurological impairment and seizure control (DHS, 2006).
52
Appendix 3: List of stakeholders interviewed per site Hospital site Peter MacCallum Cancer Centre
Position Medical Oncologist Clinical Nurse Coordinator Neurosurgeon
Royal Melbourne Hospital Neurosurgeon Medical Oncologist Nurse Unit Manager Discharge Nurse Social Worker Neurosurgeon (RMH/WH) 2 Consumers St Vincent’s Health Neurosurgeon Medical Oncologist Radiation Oncologist Social Worker Associated Nurse Unit Manager Consumer
53
Appendix 4 – CNS VAED Data
CNS Data Report Notes • All date from VAED extracts unless stated otherwise • Definition of CNS tumour by DHS ICD code profile – superset that includes the WCMICS circulated one • Note different subsets of patients used in different analyses – marked on graphs/in text • The First Episode data roughly reflects the incidence and the All Episode data roughly reflects the prevalence. • Excludes RCH • All data based on inpatient records • When care type changes, it may be recorded as a new episode for administration purpose( but it is a single episode as far as patients and clinicians are concerned) •
Royal Melbourne Includes : Royal Melbourne Hospital - City Campus (Campus code 1331, 1334) Melbourne Extended Care and Rehabilitation Service (Campus
code 1060) •
Western Health Includes : Western Hospital, Footscray (Campus Code 1180) Sunshine Hospital (campus Code 1390) Williamstown Hospital (Campus Code 1460)
Analyses Chart 1 Num CNS tumour cases over time by ICD Diagnosis For all CNS codes including malignant, benign and unknown/uncertain HospitalService (All)
NUMBER OF PATIENTS (BASED ON FIRST ADMISSION EPISODES DATA) WITH A CNS TUMOUR ICD DIAGNOSIS ACROSS WCMICS PUBLIC FACILITIES 2002/03 TO 2006/07 FY
500
Count of URNO
450 400 350 300 250
Total 439
200
417
417
440 356
150 100 50 0 2002/03
2003/04
2004/05
2005/06
2006/07
fy
54
Chart 2 Highest Sites by Volume (Based on First Episode Data) fy (All)
NUMBER OF PATIENTS (BASED ON FIRST EPISODE DATA) WITH A CNS TUMOUR ICD DIAGNOSIS CODE ACROSS WCMICS PUBLIC SITES 2002/03 TO 2006/07 FY FROM HIGHEST TO THE LOWEST
1000
Count of URNO
900
924
800 700
717
600 500
Total
400 300 200 184 100
123 67
52
PMCC
Werribee Mercy
0 Royal Melbourne
St Vincents Hospital
Western Health
Caritas
HospitalService
Chart 3. Trends across sites from the highest to the lowest for 2002/03 to 2006/07 Financial Years NUMBER OF PATIENTS (BASED ON FIRST EPISODE DATA) WITH A CNS TUMOUR ICD DIAGNOSIS CODE ACROSS WCMICS PUBLIC SITES 2002/03 TO 2006/07 FY FROM HIGHEST TO THE LOWEST
2006/07
2004/05
2005/06
2002/03
150
2003/04
2005/06 2006/07
2003/04
2004/05
200
Count of URNO
2002/03
250
fy 2002/03 2003/04 2004/05 2005/06 2006/07
2006/07
2005/06
2003/04
2004/05
2002/03
2005/06
2006/07
2003/04
2004/05
2002/03
2005/06
2004/05
2002/03
2003/04
2005/06
2006/07
2004/05
50
2003/04
2002/03
100
0 Royal Melbourne
St Vincents Hospital
Western Health
Caritas
PMCC
Werribee Mercy
HospitalService
55
Chart 4 by malignant, not clearly malignant split
NUMBER OF PATIENTS (BASED ON FIRST ADMISSION EPISODE DATA) BY MALIGNANT/ NOT CLEARLY MALIGNANT CNS DIAGNOSIS SPLIT AT ROYAL MELBOURNE AND ST VINCENTS FOR 2002/03 TO 2006/07 FY
250
Count of URNO
200
150
MalignantFlag Not Clearly Malignant Malignant
100
50
Royal Melbourne
2006/07
2005/06
2004/05
2003/04
2002/03
2006/07
2005/06
2004/05
2003/04
2002/03
0
St Vincents Hospital HospitalService fy
Chart 5 for malignant CNS codes fy (All) MalignantFlag Malignant
NUMBER OF PATIENTS (BASED ON FIRST ADMISSION EPISODE DATA) BY MALIGNANT/ NOT CLEARLY MALIGNANT CNS DIAGNOSIS SPLIT AT ROYAL MELBOURNE AND ST VINCENTS FOR 2002/03 TO 2006/07 FY
450
Count of URNO
400 350 300 250 Total 200
401 332
150 100 119
50
61
43
0 Royal Melbourne
St Vincents Hospital
Caritas
Western Health
PMCC
25 Werribee Mercy
HospitalService
56
Chart 6 Trends for Royal Melbourne and St Vincent’s MalignantFlag (All) NUMBER OF PATIENTS (BASED ON FIRST ADMISSION EPISODES DATA) WITH MALIGNANTCNS DIAGNOSIS ACROSS KEY WCMICS PUBLIC FACILITIES 2002/03 TO 2006/07 FY BY FY AT RMH AND ST VINCENTS
120
Count of URNO
100
80
60
Total
40
20
0 2002/03
2003/04
2004/05
2005/06
2006/07
2002/03
2003/04
Royal Melbourne
2004/05
2005/06
2006/07
St Vincents Hospital HospitalService fy
Chart 7-11 see Appendix Chart 12 Num procedures over time of CNS tumour cases For all Procedure Codes For all CNS codes including malignant, benign and unknown/uncertain fy (All) MalignantFlag (All) campname (All) NUMBER OF PROCEDURES BY MOST COMMON ICD CODES FOR PATIENTS WITH A CNS TUMOUR ICD DIAGNOSIS ACROSS WCMICS PUBLIC FACILITIES 2002/03 TO 2006/07 FY
2500
Count of URNO
2000
1500 Total 1000
500
4157500
9555000
9555012
3971200
9251439
3970900
5600700
9555005
9251429
5600100
4080300
9090100
9555001
9555002
9555003
0
OperCodes
57
Legend ICD Procedure Code Allied health intervtn, physiotherapy Allied health intervention, occupational therapy Allied health intervention, social work Magnetic resonance imaging of brain Intracranial stereotactic localisation Computerised tomography of brain General anaesthesia, ASA 29 Allied health intervtn, speech pathology CT of brain with IV contrast medium Removal of lesion of cerebrum General anaesthesia, ASA 39 Removal of lesion of cerebral meninges Allied health intervtn, pastoral care Allied health intervention, dietetics
9555003 9555002 9555001 9090100 4080300 5600100 9251429 9555005 5600700 3970900 9251439 3971200 9555012 9555000 4157500
2074 1842 897 845 835 780 700 648 615 574 554 408 341 256 208
R/O lesion of cerebellopontine angle
Note from this data the large volume of allied health interventions – consistent with the findings of the Lung Mapping project also – i.e. most “procedures” including surgical, medical, investigational – are actually allied heath interventions. If anything one might expect these to be under coded – suggesting that this a real and strong finding Chart 13 grouping the most common procedures for CNS NUMBER OF PROCEDURES BY MOST COMMON ICD CODES (GROUPED INTO THREE CATEGORIES) FOR PATIENTS WITH A CNS TUMOUR ICD DIAGNOSIS ACROSS WCMICS PUBLIC FACILITIES
2500
Sum of Total
2000
1500 Total 1000
500
0 9555003 9555002 9555001 9555005 9555012 9555000 9090100 5600100 5600700 4080300 9251429 3970900 9251439 3971200 4157500 Allied Health
Imaging
Surgery
Category OperCode
58
Chart 14 Total of most common procedures for CNS split in three groups NUMBER OF PROCEDURE BY MOST COMMON ICD CODES (GROUPED INTO THREE CATEGORY :ALLIED HEALTH, SURGERY AND IMAGING) FOR PATIENTS WITH A CNS TUMOUR ICD DIAGNOSIS ACROSS WCMICS PUBLIC FACILITIES
7000
Sum of Total
6000
5000
4000 Total 3000
2000
1000
0 Allied Health
Surgery
Imaging
Category
Specifically re Neurosurgery Procedure Codes Chart 15 for all CNS codes including malignant, benign and unknown/uncertain fy (All) NUMBER OF PROCEDURES BY MOST COMMON NEUROSURGERY ICD CODES FOR PATIENTS WITH A CNS TUMOUR ICD DIAGNOSIS ACROSS WCMICS PUBLIC FACILITIES 2002/03 TO 2006/07 FY
1200
Count of URNO
1000
800
600
Total
400
200
3932702
3972100
3971203
4000302
3932402
4031200
3970600
3970902
3901500
3970300
3900000
3971204
3971200
3970900
4080300
0
OperCodes
59
Legend ICD Procedure Code 4080300 3970900 3971200 3971204 3900000 3970300 3901500 3970902 3970600 4031200 3932402 4000302 3971203 3972100 3932702
Description Intracranial stereotactic localisation Removal of lesion of cerebrum Removal of lesion of cerebral meninges Removal of other intracranial lesion Lumbar puncture Biopsy of brain via burr holes Insertion of external ventricular drain Removal of lesion of cerebellum Bx of brain via osteoplastic craniotomy Removal of spinal intradural lesion R/O lsn from superficial perph nerve Insertion of ventriculoperitoneal shunt Removal of intraventricular lesion Postop reopn of crniotmy/crniectmy site R/O lsn from deep peripheral nerve Grand Total
Total 977 621 409 177 142 117 99 92 77 77 70 65 41 40 33 3037
Chart 16 for all CNS codes including malignant, benign and unknown/uncertain – trends 20034 to 2006-7 at RMH (given volumes) for the most common Neurosurgery ICD codes at all sites (above list) HospitalService (All) NUMBER OF PROCEDURES BY MOST COMMON NEUROSURGERY ICD CODES FOR PATIENTS WITH A CNS TUMOUR ICD DIAGNOSIS AT ROYAL MELBOURNE 2003/04 TO 2006/07 FY
80
60
2005/06 2004/05
100
2006/07 2003/04 2004/05 2005/06 2006/07 2003/04 2004/05 2005/06 2006/07
120
Count of URNO
2003/04
140
fy 2003/04 2004/05 2005/06 2006/07
20
2003/04 2004/05 2005/06 2006/07 2003/04 2004/05 2005/06 2006/07 2003/04 2004/05 2005/06 2006/07 2003/04 2004/05 2005/06 2006/07 2003/04 2004/05 2005/06 2006/07 2003/04 2004/05 2005/06 2006/07 2003/04 2004/05 2005/06 2006/07 2003/04 2004/05 2005/06 2006/07 2003/04 2004/05 2005/06 2006/07 2003/04 2004/05 2005/06 2006/07 2003/04 2004/05 2005/06 2006/07
40
0 4080300 3970900 3971200 3970300 3970600 4031200 3900000 3970902 3971204 3901500 4000302 3971203 3972100 3932702 OperCodes
60
*Due to lack of space only 2003/04 to 2006/07 fy have been considered for this chart Chart 17 for all CNS codes including malignant, benign and unknown/uncertain – trends 20034 to 2006-7 at St Vincent’s (given volumes) for the most common Neurosurgery ICD codes at all sites (above list) HospitalService (All) NUMBER OF PROCEDURES BY MOST COMMON NEUROSURGERY ICD CODES FOR PATIENTS WITH A CNS TUMOUR ICD DIAGNOSIS AT ST VINCENTS 2003/04 TO 2006/07 FY
2004/05
2005/06 2006/07
2004/05
2005/06 2006/07 2003/04
2005/06 2006/07 2003/04
2004/05
2004/05
2005/06 2006/07 2003/04
2005/06 2006/07 2003/04
2004/05
2005/06 2006/07 2003/04
2004/05
2004/05
2005/06 2006/07 2003/04
2004/05
2005/06 2006/07 2003/04
2005/06 2006/07 2003/04
2004/05
2004/05
2005/06 2006/07 2003/04
10
2004/05
20
2005/06 2006/07 2003/04
2003/04 2004/05 2005/06 2006/07
2003/04
30
2004/05
40
fy
2005/06 2006/07
50
2003/04
60
2003/04
70
2004/05
80
2003/04
90
2005/06 2006/07
2004/05
Count of URNO
2005/06 2006/07
100
0 4080300 3970900 3971200 3970300 3970600 4031200 3900000 3970902 3971204 3901500 4000302 3971203 3972100 3932702 OperCodes
*Due to lack of space only 2003/04 to 2006/07 FY have been considered for this chart Chart 18 Specifically for SD cases – to try and pick up chemotherapy NUMBER OF PROCEDURES BY MOST COMMON ICD PROCEDURE CODES IN ALL SAME DAY ADMISSIONS FOR PATIENTS WITH MALIGNANT CNS ICD CODES AT RMH AND ST VINCENTS FOR 2002/03 TO 2006/07 FY
25
Count of URNO
20
15 Total 10
5
0 1391500 1391800 9619900 3900000 9090100 9219300 1370602 1370603 3970900 3970902 4080300 9218400 9251429 9251499 9251599 Chemotherapy
Others Category OperCode
61
Legend ICD Description Procedure Code 1391500 IV admin of pharmac agent antineoplastic (maps to 9619900 below) 1391800 Chemo IV >1 & 95 hours Seizure W Catastrophic or Severe CC Spinal Cord Conditions W or W/O O.R. Procedures W/O Catastrophic or Severe CC Chemotherapy Peripheral and Cranial Nerve & Other Nervous System Procedures W CC Seizure W Catastrophic or Severe CC
B03A A06Z B76A B61B R63Z B07A B76A
Chart 38 for all CNS codes – malignant or otherwise – for all episodes- trends over time for top 4 TOTAL NUMBER OF SEPARATIONS TO PRIVATE ACCOMODATION (H) AND TRANSFER (T) FOR ALL ADDMISSIONS FOR PATIENTS WITH A CNS TUMOUR ICD DIAGNOSIS (ALL TYPES) AT ROYAL MELBOURNE AND ST VINCENTS 2002/03 TO 2006/07 FY
2006/07
2004/05
2005/06 2004/05
2006/07
fy
2002/03 2003/04
2002/03
2003/04
2006/07
2005/06
2002/03
2003/04 2004/05
2005/06 2006/07
2003/04 2004/05
2006/07 2002/03
10
2005/06
2003/04 2004/05
20
2005/06
2005/06 2004/05
2002/03
30
2006/07
40
2002/03 2003/04 2004/05 2005/06
50
2005/06
2002/03
60
2006/07
70
2003/04 2004/05
80
2006/07
2002/03
Count of URNO 2003/04
90
Royal Melbourne
B66B
B02C
B02B
B02A
B66B
B02C
B02B
B02A
0
St Vincents Hospital HospitalService vicdrg
Legend DRG B02C B02B B66B B02A
Description Craniotomy W/O CC Craniotomy W Severe or Moderate CC Nervous System Neoplasm W/O Catastrophic or Severe CC Craniotomy W Catastrophic CC 77
2002/03 2003/04 2004/05 2005/06 2006/07
Appendix The graphs based on (first episode) morphology codes shows numbers which are lower than expected. More evaluation is needed to verify these numbers. Chart 7 Tumour morphology for malignant CNS codes fy (All) MalignantFlag 1 HospitalService (All) NUMBER OF PATIENTS ( BASED ON FIRST EPISODE DATA) BY ICD MORPHOLOGY CODE TOP 10 BY VOLUME) FOR MALIGNANT CNS ICD CODES AT ST VINCENT'S AND ROYAL MELBOURNE FOR 2002/03 TO 2006/07 FY
60
Count of URNO
50
40
30
Total
20
10
M95051
M87203
M80703
M90643
M81403
M95300
M93913
M80001
M94003
M93823
M93803
M94013
M94403
0
DiagCodes
Legend ICD Morphology Code M94403 M94013 M93823 M93803 M94003 M80001 M93913 M95300 M81403 M90643 M80703 M87203 M95051
Description
Glioblastoma NOS Astrocytoma, anaplastic Mixed glioma Glioma, malignant Astrocytoma NOS Neoplasm, uncertain whether benign or malignant Ependymoma NOS Meningioma NOS Adenocarcinoma NOS Germinoma Squamous cell carcinoma NOS Malignant melanoma NOS Ganglioglioma NOS
54 17 9 9 5 4 4 3 3 2 2 2 2
78
Chart 8 M94403 - Glioblastoma NOS AT RMH and St Vincent’s FY(All) MalignantFlag (All) NUMBER OF PATIENTS (BASED ON FIRST EPISODE DATA) BY ICD MORPHOLOGY CODE FOR MALIGNANT ICD CODES AT ST VINCENTS AND RMH FOR 2002-3 TO 2006-7 FIN YRS
40
Count of URNO
35 30 25 20
Total
15 10 5 0
M94403
M94403
St Vincents Hospital
Royal Melbourne HospitalService DiagCodes
Chart 9 M94403 - Glioblastoma NOS and M95300 - Meningioma NOS combined AT RMH and St Vincent’s fy (All) MalignantFlag (All) DiagCodes (All) NUMBER OF PATIENTS ( BASED ON FIRST EPISODE DATA) BY ICD MORPHOLOGY CODE TOP 10 BY VOLUME) FOR MALIGNANT CNS ICD CODES AT ST VINCENT'S AND ROYAL MELBOURNE FOR 2002/03 TO 2006/07 FY
90
Count of URNO
80 70 60 50 Total 40 30 20 10
St Vincents Hospital
Royal Melbourne
0
HospitalService
79
Chart 10 Tumour morphology for not clearly malignant CNS codes fy (All) MalignantFlag 0 campname (All) NUMBER OF PATIENTS (BASED ON FIRST EPISODE DATA) BY ICD MORPHOLOGY CODE FOR NOT CLEARLY MALIGNANT ICD CODES AT ST VINCENTS AND RMH-CITY CAMPUS FOR 2002-3 TO 2006-7 FIN YRS - TOP 10 BY VOLUME
120
Count of URNO
100
80
60
Total
40
20
0
95 M
30
0 95 M
0 60
80 M
00
1 95 M
70
0 95 M
0 40
94 M
21
1 95 M
1 05
95 M
32
0 91 M
1 61
90 M
0 84
DiagCodes
Legend ICD Morphology Code M95300 M95600 M80001 M95700 M95400 M94211 M95051 M95320 M91611 M90840
Description
Meningioma NOS Neurilemmoma NOS Neoplasm, uncertain whether benign or malignant Neuroma NOS Neurofibroma NOS Pilocytic astrocytoma Ganglioglioma NOS Fibrous meningioma Haemangioblastoma Dermoid cyst NOS Grand Total
Total
97 52 23 18 18 5 5 4 2 2 226
Note - M80001 occurs in both as malignant/not clearly split based on DHS stated ICD diagnostic codes not morphology codes
80
Chart 11a M95300 - Meningioma NOS - split across RMH and St Vincent’s fy (All) MalignantFlag 0 NUMBER OF PATIENTS ( BASED ON FIRST EPISODE DATA) BY ICD MORPHOLOGY CODE FOR NOT CLEARLY MALIGNANT CNS ICD CODES AT ST VINCENT'S AND ROYAL MELBOURNE FOR 2002/03 TO 2006/07 FY
70
Count of URNO
60
50
40 Total 30
20
10
0
M95300
M95300
Royal Melbourne
St Vincents Hospital HospitalService DiagCodes
Chart 11b for all episodes (both malignant and not clearly malignant)
fy (All) campname (All) TOTAL NUMBER OF PATIENTS(INCLUDES ALL EPISODES) BASED ON ICD MORPHOLOGY CODES FOR PATIENTS WITH CNS TUMOUR ICD DIAGNOSIS ACROSS ALL WCMICS SITES FOR 2002/03 TO 2006/07 FY
900
Count of URNO
800 700 600 500 Total 400 300 200 100
M94503
M95320
M95391
M93913
M94211
M95051
M91611
M85003
M85006
M95303
M93803
M95700
M95400
M94003
M93823
M80001
M94013
M95600
M95300
M94403
0
DiagCodes
81
Appendix 5 – Retrospective Data Collection Tool
82
14. References Articles •
Chang, Susan.M, Parney, Ian. F, Huang, Wei et al. Patterns of Care for Adults with Newly Diagnosed Malignant Glioma. Journal of American Medical Association, 2005; 295 (5):557564
•
Fisher, P.G., Buffler, P.A. Malignant Glioma in 2005. Where to GO From Here? Journal of American Medical Association, 2005; 293 (5): 615-617
•
Grant, R. Overview: Brain Tumour Diagnosis and management/ Royal College of Physician’s guidelines. Journal of Neurology and Neurosurgery Psychiatry, 2004; 75 (Suppl ll): ii18-ii23
•
Pybus, E. Comment: A better deal for brain tumour patients? British Journal of Neuroscience Nursing, 2006; 3 (7): 304-305.
•
Rosenthal, M.A, Drummond, K.A, Dally, M, Murphy, M, Cher, L, Ashley, D, Thursfield, V, and Giles, G.G. Management of glioma in Victoria (1998-2000): retrospective cohort study. Medical Journal of Australia,2006; 184(6): 270-273
Guidelines •
Department of Human Services, Clinical excellence in cancer care. A model for safety and quality in Victoria cancer services. 2007
•
Department of Human Services, Linking Cancer care. A guide for implementing coordinated cancer care. 2007
•
Department of Human Services, Patient Management Framework. Central Nervous System tumour stream: malignant glioma. A guide for consistent cancer care, 2006.
•
National Institute for Clinical Excellence Guidance, Improving Outcomes for People with Brain and Other CNS Tumours. The manual, June 2006.
83
