Guidelines International Journal of Stroke 2016, Vol. 11(7) 807–822 ! 2016 World Stroke Organization Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1747493016660102 wso.sagepub.com

Canadian Stroke Best Practice Recommendations: Managing transitions of care following Stroke, Guidelines Update 2016 Jill I Cameron1,2,3, Colleen O’Connell4,5, Norine Foley6,7, Katherine Salter7, Rhonda Booth8, Rosemary Boyle9, Donna Cheung10, Nancy Cooper11,12, Helene Corriveau13, Dar Dowlatshahi14,15, Annie Dulude16, Patti Flaherty17,18, Ev Glasser19, Gord Gubitz20,21, Debbie Hebert3, Jacquie Holzmann22, Patrick Hurteau23, Elise Lamy24, Suzanne LeClaire25, Taylor McMillan26, Judy Murray27, David Scarfone28, Eric E Smith29,30, Vivian Shum31, Kim Taylor32, Trudy Taylor33, Catherine Yanchula34, Robert Teasell35 and Patrice Lindsay12,19; on behalf of the Heart and Stroke Foundation Canadian Stroke Best Practice Committees

Abstract Every year, approximately 62,000 people with stroke and transient ischemic attack are treated in Canadian hospitals. For patients, families and caregivers, this can be a difficult time of adjustment. The 2016 update of the Canadian Managing Transitions of Care following Stroke guideline is a comprehensive summary of current evidence-based and consensus-based recommendations appropriate for use by clinicians who provide care to patients following stroke across a broad range of settings. The focus of these recommendations is on support, education and skills training for patients, families and caregivers; effective discharge planning; interprofessional communication; adaptation in resuming activities of daily living; and transition to long-term care for patients who are unable to return to or remain at home. Unlike other modules 1

Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, Canada 2 Rehabilitation Sciences Institute, University of Toronto, Toronto, Canada 3 Toronto Rehabilitation Institute, Toronto, Canada 4 Faculty of Medicine, Division of Physical Medicine and Rehabilitation, Dalhousie University, Halifax, Canada 5 Stan Cassidy Centre for Rehabilitation, Saint John, Canada 6 Faculty of Nutrition Sciences, Western University, London, Canada 7 workHORSE Consulting Inc., London, Canada 8 Nova Scotia Rehabilitation Centre, Halifax, Canada 9 Department of Health, Chronic Disease Prevention and Management Unit, New Brunswick, Canada 10 South East Toronto Stroke Network, Toronto, Canada 11 Ontario Long Term Care Association, Toronto, Canada 12 Institute Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada 13 Universite´ de Sherbrooke, E´cole de re´adaptation, Que´bec, Canada 14 The Ottawa Hospital Stroke Program, Ottawa, Canada 15 Faculty of Medicine, University of Ottawa, Ontario, Canada 16 Stroke Survivor, Quebec, Canada 17 CONNECT Communities, British Columbia, Canada 18 British Columbia Brain Injury Association, Vancouver, Canada 19 Heart and Stroke Foundation, Ottawa, Canada 20 Faculty of Medicine, Dalhousie University, Nova Scotia, Canada 21 Queen Elizabeth II Health Sciences Centre, Capital District Health Authority, Halifax, Canada

22

Integrated Primary Health Services, Sunrise Health Region, Saskatchewan, Canada 23 Stroke Rehabilitation Program, Bruye`re Continuing Care, Ottawa, Canada 24 Villa Medica Hoˆpital de re´adaptation, Quebec, Canada 25 Saskatoon Health Region, Saskatoon, Canada 26 Winnipeg Regional Health Authority Home Care Program, Winnipeg, Canada 27 Mackenzie Health District Stroke Centre, Richmond Hill, Canada 28 Family Physician Practice, Windsor, Canada 29 Calgary Stroke Program, Calgary, Canada 30 Department of Clinical Neurosciences, Hotchkiss Brain Institute, University of Calgary, Canada 31 CARECORP Seniors Services, Vancouver, Canada 32 Parkridge Centre, Saskatoon Health Region, Saskatoon, Canada 33 Carewest Dr. Vernon Fanning Centre, Calgary, Canada 34 Schulich School of Medicine & Dentistry, Western University – Windsor Program, Windsor, Canada 35 Department of Physical Medicine and Rehabilitation, Schulich School of Medicine & Dentistry, Western University, London, Canada Corresponding author: Patrice Lindsay, Heart and Stroke Foundation, 222 Queen Street, Suite 1402, Ottawa, Ontario K1P 5V9, Canada. Email: [email protected]

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contained in the Canadian Stroke Best Practice Recommendations (such as acute inpatient care), many of these recommendations are based on consensus opinion, or evidence level C, highlighting the absence of conventional evidence (i.e. randomized controlled trials) in this area of stroke care. The quality of care transitions between stages and settings may have a direct impact on patient and family outcomes such as coping, readmissions and functional recovery. While many qualitative and non-controlled studies were reviewed, this gap in evidence combined with the fact that mortality from stoke is decreasing and more people are living with the effects of stroke, underscores the need to channel a portion of available research funds to recovery and adaptation following the acute phase of stroke. Keywords Stroke, guidelines, transitions, patient education, reintegration, long-term care Received: 21 April 2016; accepted: 6 June 2016

Introduction Stroke is a life-altering event that may involve an extended recovery period, often leaving patients with functional impairments that are slow to resolve. The post-discharge period is consistently reported by stroke survivors and their families to be a stressful and challenging time as each adjusts to new roles.1–4 Patients and their families often lose the social, emotional, and practical support offered by inpatient care. For patients returning home to live with their families, there are challenges related to resumption of activities of daily living, return to work, driving, and the pursuit of leisure activities. In addition to changes in the lives of persons who experience a stroke, there can also be a significant impact on family members, who may lack the necessary skills and knowledge required to fulfill their new roles as caregivers, leaving them feeling ill-prepared and at increased risk of negative health associated with increased caregiver burden.1–4 Therefore, education, support, and skills training to prepare families for their caregiving role are essential to increase participation and safety, clarify expectations, improve quality of life, and reduce depression and perceived burden. Transitions of care are defined within the context of these guidelines as the movement of patients among: providers, different goals of care, and across the various settings where healthcare services are received. The general principles behind these recommendations are inherent in understanding that the goal of transition management is to facilitate and support seamless transitions across the continuum of care, and to achieve and maintain optimal adaptation, outcomes, and quality of life for patients, families, and caregivers following a stroke. This incorporates physical, emotional, environmental, financial, and social influences. In this context, caregivers are informal, unpaid family and friends who participate in care activities with the stroke survivor.

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Effective discharge planning, which should include caregivers and family, is essential for smooth transitions through the continuum of stroke care. Evidence shows that when there is coordination of care beyond the inpatient setting and community support services are provided, patient outcomes and patient and caregiver satisfaction improve.5–7 In addition, information provided at each phase of acute care, rehabilitation, community reintegration and long-term recovery should be relevant to the patient’s and the family’s changing needs and the delivery should be interactive and adapted to the cognitive and communication challenges faced by some stroke survivors. Increased screening, assessment, and surveillance of patient, family, and caregiver needs and coping will provide a holistic patient-centered and family-centered approach to stroke care and optimally lead to better recovery, community reintegration, and adaptation. The 2016 update of the Canadian Managing Transitions of Care following Stroke guideline includes a comprehensive summary of current evidence-based recommendations appropriate for use by clinicians from all disciplines that provide care to patients following stroke across a broad range of settings. The focus of these recommendations is on support, education and skills training for patients, families, and caregivers; effective discharge planning; interprofessional communication; adaptation in resuming activities of daily living; and transition to long-term care for patients who are unable to return or remain at home. The evidence related to transitions of care following stroke has been reviewed and a set of clinical practice recommendations has been developed and updated by the Canadian Stroke Best Practices Managing Transitions of Care following Stroke writing group. Presented in this publication is the fifth update of these recommendations. Additional supporting information on rationale, implications for system planning, implementation resources and performance measures to monitor quality of care through transitions may be found at

Cameron et al. www.strokebestpractices.ca. Following the release of these recommendations, the literature in this area is continually monitored and these guidelines will be updated again in two years’ time.

Guideline development methodology The Canadian Stroke Best Practice Recommendations development and update process follows a rigorous framework adapted from the Practice Guideline Evaluation and Adaptation Cycle.8 An interprofessional group of experts was convened to participate in reviewing, drafting, and revising all recommendation statements. Members with extensive experience in the topic area were selected as were those who are considered leaders and experts in their field, having been involved in research on the topics addressed in this module. Persons with experience in the review and appraisal of research evidence and individuals (or family members of individuals) who had experienced a stroke were also included either as group members or external reviewers in the development process. The interprofessional writing group and external reviewers included nurses, stroke neurologists, physiatrists, a social psychologist, family physicians, health education specialists, social workers, physiotherapists, occupational therapists, speech language pathologists, stroke survivors, care coordinators, and long-term care managers. These experts work in a wide range of healthcare settings. This interprofessional approach ensured that the perspectives and nuances of all relevant health disciplines and care settings were considered in the development of the recommendations, and mitigated the risk of potential or real conflicts of interest from individual members. Other experts outside the writing group were consulted for very specific issues such as admission access and processes in long-term care settings. A systematic literature search was conducted to identify research evidence for each topic area addressed in the Managing Stroke Transitions of Care following Stroke module. All literature searches were conducted by individuals with expertise performing systematic literature reviews and who were not directly involved in active research within any of the identified topic areas or in the writing group to promote objective identification and selection of evidence. Literature searches include set time frames which overlap the search time frames associated with the previous revision of the best practice recommendations by six months to ensure high catchment of key articles within that time frame. The literature for this module was updated to November 2015. The writing group was provided with comprehensive evidence tables that included summaries of all high quality evidence identified through the literature

809 searches. Systematic reviews, meta-analyses, randomized controlled trials, and high-powered observational studies were included where available. The authors recognize that for many of the topics and associated recommendations for transitions of care, there is a paucity of Level A evidence. Randomized controlled trials are difficult to conduct in this area of care, and the evidence for most of the following recommendations is based on qualitative and observational studies and expert opinion. The Canadian Stroke Best Practice Recommendations are responsive to the need to address transitions; their inclusion is intended to facilitate a holistic approach to patient and family-centred care to promote optimal outcomes, as well to highlight the importance of further research into this important aspect of stroke care. The writing group discussed and debated the value of the evidence and, through consensus, developed a set of proposed recommendations. Through their discussions, additional research may have been identified and added to the evidence tables, if consensus on the value of the research was achieved. All recommendations are assigned a level of evidence ranging from A to C, according to the criteria defined in Table 1.9,10 When developing and including ‘‘C-Level’’ recommendations, consensus was obtained within the writing group and validated through the internal and external review process. This level of evidence is used cautiously, and only when there is a lack of stronger evidence for topics considered important system drivers for stroke care (e.g. supporting patient and family transitioning home or some screening practices). Recommendations with this level of evidence may also be made in response to requests from a range of healthcare professionals who seek guidance and direction from the experts in the absence of strong evidence on certain topics that are encountered on a regular basis. In some sections, additional information was identified as important to include, even though it did not meet the evidence criteria for a ‘recommendation’. This information has been included as ‘clinical considerations’ intended to provide additional guidance or clarity in the absence of evidence.10 After completion of the draft update to the recommendations, the module underwent an internal review by the Canadian Stroke Best Practices Advisory Committee, and an external review by thirteen Canadian and international experts who were not involved in any aspects of the guideline development. All feedback was reviewed and addressed by the writing group members and the advisory committee to ensure a balanced approach to addressing suggested edits. All recommendations are accompanied by additional supporting information, including a rationale for inclusion of the topics, system implications to ensure the structural elements, and resources are available to

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International Journal of Stroke 11(7) Table 1. Summary of criteria for levels of evidence reported in the Canadian Stroke Best Practice Recommendations (Update 2016) Level of Evidence

Criteria9

A

Evidence from a meta-analysis of randomized controlled trials or consistent findings from two or more randomized controlled trials. Desirable effects clearly outweigh undesirable effects or undesirable effects clearly outweigh desirable effects

B

Evidence from a single randomized controlled trial or consistent findings from two or more welldesigned non-randomized and/or non-controlled trials, and large observational studies. Desirable effects outweigh or are closely balanced with undesirable effects or undesirable effects outweigh or are closely balanced with desirable effects

C

Writing group consensus and/or supported by limited research evidence. Desirable effects outweigh or are closely balanced with undesirable effects or undesirable effects outweigh or are closely balanced with desirable effects, as determined by writing group consensus. Recommendations assigned a Level-C evidence may be key system drivers supporting other recommendations, and some may be expert opinion based on common, new or emerging evidence or practice patterns

achieve recommended levels of care, performance measures to monitor care delivery and patient outcomes, as well as implementation resources and a summary of the evidence on which the recommendations were based. The evidence tables are available as well. All of this additional supporting information for the recommendations included in this publication can be found at http://www.strokebestpractices.ca/index.php/ transitions/ For a more detailed description of the methodology on development and dissemination, please refer to the Canadian Stroke Best Practice Recommendations Overview and Methodology documentation available on the Canadian stroke best practices website at http://www.strokebestpractices.ca/wp-content/up loads/2014/08/CSBPR2014_Overview_Methodology_ ENG.pdf10

Canadian Stroke Best Practice Recommendations: managing transitions of care following stroke, Practice Guidelines Update 2016 This section provides detailed recommendations associated with education and support for families and caregivers, discharge planning, interprofessional communication, community reintegration, transition to long-term care and palliative care. All recommendations are assigned a level of evidence which reflects the strength and quality of the evidence available to support the recommendations as determined through consensus of the writing group and validated through the external review process.

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Section 1: Supporting patients, families and caregivers through transitions following stroke Following stroke, patients, families and caregivers are typically faced with multiple life changes and challenges as the patient transitions between stages of recovery. One of the first hurdles surrounds the preparations to return home, whereby patients need to feel safe in the home environment and grapple with issues related to the type and intensity of support needed, the primary focus of care and who will provide the support, while caregivers also need to feel supported.4 Several recent qualitative studies were identified in which the experiences of both patients and their caregivers following stroke were examined in order to better understand their needs as they make the transition home.4,11–13 Similar themes emerged across studies. Patients and caregivers identified the need to feel safe, feel well informed, prepared, and to have the appropriate skills in place to provide support (and be supported). The current guidelines have been developed with an emphasis on assessment, and access to support that is appropriate to patient and caregiver need and values throughout the continuum and at each possible transition points. Recommendations 2016 1.0 Patients, families, and caregivers should be assessed and prepared for transitions between care stages and settings through information sharing, provision of education, skills training, psychosocial support, and awareness of community services [Evidence Level B]. Interventions must be patient-centered and tailored to patient values and needs [Evidence Level C]. Refer to Figure 1—Stroke Transitions of Care Model

Cameron et al.

811 optimal outcomes (for example, mental health experts, social services.).

1.1 Screening and assessment i.

Patients, families and caregivers should be screened for their level of coping, risk for depression, and other physical and psychological issues [Evidence Level B]. Ideally screening should take place at each transition. a. Validated screening tools should be used whenever possible to ensure a consistent approach to identify potential issues during transitions [Evidence Level C]. Tables summarizing the psychometric properties of tools available to Assess Participation and Health-Related Quality of Life are available at www.strokebestpractices.ca. ii. Patients, families and caregivers should be assessed at each transition (starting with first contact with the healthcare system) to determine their needs, readiness for information and ability to integrate knowledge related to education, training, psychosocial support, and health and social services [Evidence Level B]. They should be reassessed when there is a change in health status or other appropriate indication [Evidence Level B]. Refer to Section 2 for additional recommendations on education and training. a. Family members and caregivers may be assessed for the following issues as they relate to their ability to care for the patient with stroke: . caregivers’ current health status, employment and social responsibilities, and how those will be managed in providing stroke care [Evidence Level B]; . caregiver capabilities and experience in providing care to the person affected by stroke [Evidence Level C]; . resource issues such as financial situation, housing, transportation, insurance, healthcare benefits, and medication cost coverage [Evidence Level C]; . support from other family members, relatives, and social networks [Evidence Level C]. b. The type and depth of assessments should be appropriate to the individual patient’s needs, issues identified during screening, and the care setting to where the patient is transitioning (such as home with or without home care services, inpatient rehabilitation, assisted living, and long-term care) [Evidence Level C]. iii. When issues are identified through screening and assessments, patients [Evidence Level B], families, and caregivers [Evidence Level C] should be considered for referral to appropriate care professionals to address the issues and promote

1.2.

Patient, family and caregiver support

i. Support for patients, families and caregivers should begin at admission and continue through discharge to the next stage or setting of care [Evidence Level B]. ii. The core elements defined in the Pathways for People with Stroke to Live Fully in the Community model should be addressed at each transition point as appropriate to the setting [Evidence Level C]. Refer to Table 2. iii. The use of telemedicine technology modalities (e.g. video, and web-based technologies and services such as web-based support groups, telerehabilitation), should be considered to increase access to ongoing support services, healthcare services, and rehabilitation therapies for patients following transitions to the community or setting from which patients and family members are unable to travel to access care and services [Evidence Level B].

Section 2: Patient, family and caregiver education following stroke Education across the continuum of care is an important component of support for patient, families, and caregivers, particularly with regard to secondary stroke prevention and chronic disease self-management. In several randomized trials, the effects of information and support packages for patients and their caregivers following stroke have been examined. Those trials that simply provided participants with written information as the intervention tended to be less effective compared with programs that included additional components such as verbal reinforcement or information that was individualized.14–16 Added benefit may also be associated with active interventions that provide specific hands-on skills training for the caregiver.17 A 2012 Cochrane review assessed interventions related to the provision of information, compared with usual care.18 Both patients and caregivers receiving an intervention demonstrated improved knowledge of stroke services, while patients expressed greater satisfaction with stroke information and improvements in depression scores. Larger effects were associated with interventions that were considered to be ‘active’ interventions, meaning there was patient or caregiver engagement during the sessions. Engagement could include the opportunity to ask questions, request additional information, be provided with hands-on training, or involve the use of an

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International Journal of Stroke 11(7) learning needs and goals should be assessed and documented by members of the healthcare team [Evidence Level B]. Note: This applies to all settings including ambulatory care and emergency departments where there is shorter interaction time with patients and greater risk of learning needs being unmet.

Table 2. Transitions of care following stroke Checklist Support for patient, families and caregivers may include: «

Written discharge instructions and recommendations that identify collaborative actions plans, follow-up care and goals

«

Access to a designated contact person in the hospital or community for care continuity and queries

«

Ongoing access to and advice from health and social service organizations appropriate to needs and stage of transition and recovery

«

Links to and information about local community agencies such as stroke survivor groups, peer survivor visiting programs, meal provider agencies, and other services and agencies

«

Shared decision-making/participation regarding transitions between stages of care

«

Counseling, preparation, and ongoing assessment for adjustment to change of living setting, change in physical needs and increased dependency, change in social roles and leisure activities, impact on other family members (e.g. spouse or partner, children), loss of home environment, and potential resource issues

«

Access to restorative care and active rehabilitation to improve and/or maintain function based on the individualized care plan

«

Advance care planning, palliative care, and end-of-life care as applicable

«

Where possible, access to peers (survivor/family), who has experienced the transition and who can help the patient better understand the transition

«

Accurate and up-to-date information about the next care setting, what the patient and family can expect, and how to prepare.

interactive workbook and/or some means of follow-up reinforcement.

.Recommandations 2016 2.0

Stroke patient, family, and caregiver education is an integral part of stroke care that must be addressed at all stages and settings across the continuum of stroke care [Evidence Level A].

2.1

Assessment of patient, family, and caregiver learning needs

i.

Throughout each stage along the continuum of stroke care, patient, family, and caregiver

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2.2 Delivery of education i.

Based on findings of educational assessments, a process for delivering education should be implemented for stroke patients, families, and caregivers [Evidence Level B]. ii. It is recommended that individualized patient, family, and caregiver education: a. include information sharing, teaching of selfmanagement skills, and training of family and caregivers to participate in and provide safe stroke patient care [Evidence Level B]. b. be goal-oriented and facilitate decision-making regarding care and recovery [Evidence Level C]. c. cover all aspects of stroke care and recovery [Evidence Level A], and include content specific to the stage of care or recovery, and be appropriate to the readiness and needs of the patient, family, and caregiver [Evidence Level B]. Refer to Table 3 for additional information regarding self-management topics for patients, family and caregivers. d. be interactive, current, ongoing, repetitive, evaluative, and available in a variety of languages and formats (e.g. written, oral, pictorial, instructive, and group counseling approaches); it should address varying levels of health literacy and ensure access to communication devices for patients (e.g. appropriate resources to help patients with aphasia and cognitive deficits or impairments communicate more effectively) [Evidence Level B]. 2.3 It is recommended that processes be in place to monitor education needs and reinforce education provided: i. Individualize and coordinate ongoing education across transition points, and across stages along the continuum [Evidence Level B]. ii. Ensure that patient, family, and caregiver educational episodes are documented in the patient record and accessible by all members of the healthcare team [Evidence Level B]. iii. Assess patient, family and caregiver understanding and retention of previously taught information [Evidence Level A].

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Table 3. Self-management for patients, family and caregivers Patient education topicsa

« « « « « « « « « « « « « « «

Exercise Symptom management techniques Risk factor management (including drug adherence) Secondary stroke prevention Nutrition Fatigue and sleep management Medication management Coping with physical changes Coping with emotions such as fear, anger and depression Coping with cognitive and memory changes Coping with perceptual deficits Training in communication Health-related problem-solving and decisionmaking Relationships and sexuality Community reintegration including leisure and driving

Family and caregiver education topics

« « « « « « « « « «

Training in personal care techniques (e.g. feeding techniques) Communication strategies Physical handling techniques (e.g. transfers from bed to chair, positioning of a hemiplegic limb) Food preparation and modifications for patients with dysphagia Education on the self-management model to encourage patient independence when possible How to access community services and resources Problem-solving techniques Respite care options Ongoing health system navigation End-of-life and palliative care options

a

Topics may be applicable to families and caregivers as well as patients.

iv. Include reinforcement of information previously taught, especially critical information that has not been retained (e.g. medication information and management) [Evidence Level B]. v. Ensure all care settings have up-to-date inventories of community resources available to stroke patients, families, and caregivers, and offer assistance in obtaining needed services [Evidence Level C]. 2.4 Promoting self-management for patients, family, and caregivers following stroke i. Patient education should promote self-efficacy through mastering self-management skills, [Evidence Level B]. Refer to Table 3 for additional information regarding self-management topics for patients, family, and caregivers. ii. With the patient’s consent, family members and caregivers may be invited and encouraged to attend care and therapy sessions with the patient, given the opportunity to learn proper patient care skills, and have their questions addressed [Evidence Level C]. iii. Patients should be encouraged to participate in rehabilitation related to vocational, leisure, and social reintegration/reengagement needs

[Evidence Level C]. Refer to Section 4 of this module for additional information.

Section 3: Interprofessional communication and discharge planning Transitions between and within health care settings pose a safety and quality of care concern for individuals who have experienced stroke. A consensus policy statement by the American College of Physicians in 2009 highlighted concerns of patient safety at transition points, particularly between inpatient and outpatient care.19 An individual with stroke is vulnerable to many of these transition points as they progress through the acute, sub-acute, and chronic stages of recovery, interacting with a range of clinicians in several different health-care settings. Communication between healthcare professionals and care settings is critical for ensuring patient safety and quality of care. For example, areas of communication deficits were examined in a systematic review conducted by Kripalani and colleagues.20 The review focused on communication between hospitals and primary care providers, as well as interventions undertaken to facilitate improved communication between hospital and primary care providers during the period of transition at discharge. The study authors noted that discharge

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814 letters were far more likely to reach primary care physicians quickly than were discharge summaries. However, discharge letters were less detailed, often missing information such as a main diagnosis, hospital treatment details, medications prescribed at discharge, plans for follow-up, and notes on patient or family counselling. Overall, discharge summaries that were computer-generated using a standardized template were longer, judged to be of higher quality but not as timely. Discharge planning aims to reduce length of hospital stay, co-ordinate care and ultimately improve outcome. Although considered a routine part of care, discharge planning has not been well studied following stroke. In most cases, trials evaluated a discharge plan either as a stand-alone intervention, or as a component of a broader intervention versus usual care.5–7 Overall, the use of discharge plans was associated with improved outcomes such as significantly reduced length of hospital stay, significant reduction in readmissions at three months, and significantly greater caregiver preparedness.5–7,21 Discharge Planning and Interprofessional Communication Recommendations 2016 3.1 Patient Care Plan: It is recommended that the patient and family have an up-to-date care plan that is patient-centered, culturally appropriate, defines ongoing medical, functional, rehabilitation, cognitive, communication, and psychosocial needs [Evidence Level C]. Ideally, the care plan should be initiated at the first point of contact with the healthcare system, such as the emergency department, and continue through the continuum of care with the patient. i. The patient and healthcare providers should review the care plan regularly at each transition, when changes/improvements in health status occur, when patient is not progressing in recovery, and update the care plan together to reflect changing needs, evolving goals, and progress. [Evidence Level B]. 3.2 Discharge planning should be initiated as soon as possible after the patient is admitted to each stage and setting of care [Evidence Level B]. i. Discharge planning discussions, decisions, and activities should be ongoing to reflect the patient’s changing needs, evolving goals, and progress through the recovery process [Evidence Level B]. ii. The discharge planning process should be a wellorganized collaboration between health professionals, patients, families, and caregivers [Evidence Level B].

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International Journal of Stroke 11(7) a. Formulate goal-oriented discharge plan and discharge date with patient, family, and caregivers [Evidence Level B]. b. Identify possible discharge issues and patient needs, which could potentially delay discharge and address early in the discharge planning process [Evidence Level B]. c. Patients discharged back to the community directly from the emergency department should have their discharge planning needs addressed, and appointments booked prior to leaving the emergency department [Evidence Level C]. iii. Discharge planning activities may include the following, as appropriate to patient needs: a. Home assessment to identify home modifications required for accessibility and safety [Evidence Level B]. b. A pre-discharge assessment of patient physical needs, caregiver capacity, patient and family/ caregiver psychosocial needs, and decisionmaking needs [Evidence Level C]. Refer to Sections 1 and 2 for additional information. c. Caregiver training specific to the current and ongoing needs of the individual patient with stroke [Evidence Level B]. Refer to Sections 1 and 2 for additional information. d. Planned, goal-oriented day, weekend, and overnight visits, to identify potential barriers and assess readiness for discharge, and inform therapy and discharge planning to facilitate the transition home [Evidence Level B]. e. A post-discharge follow-up plan, initiated by a designated team member, such as a case manager or stroke navigator, to ensure continuity of care [Evidence Level B]. f. Written discharge instructions as a component of patient care plans which address the following issues as appropriate: functional ability at the time of discharge, risks and safety considerations, action plans for recovery, medications at discharge and instructions for adjustment, follow-up care, and follow-up care provider contact information [Evidence Level B]. 3.3 Health professional communication: Processes should be in place to ensure timely and effective transfer of relevant patient-related information at all points of access and transition in the healthcare system, to ensure seamless transitions and continuity of care [Evidence Level B]. i. All members of the interdisciplinary stroke team should share timely and up-to-date information

Cameron et al. with healthcare providers at the next stage of care [Evidence Level B]. ii. The information transferred should be: a. timely, and ideally occur prior to the time of patient discharge or transfer to next care setting [Evidence Level C]. b. comprehensive with all relevant patient information, medications, and progress to date as well as planned appointments, ongoing recovery needs and goals [Evidence Level B]. c. a formal, typed, detailed, discharge summary (from the most responsible physician) sent to the primary care physician [Evidence Level B]. Information on core content for discharge summaries can be found at www.strokebestpractices. ca iii. A designated member of the care team should facilitate transfer of patient-related information, and patient referrals to appropriate follow-up services [Evidence Level B].

Section 4: Community reintegration following stroke Reintegration to former life roles (vocational or leisure roles, for example) are important goals for the individual who has experienced stroke. The resumption of desired social and leisure pursuits is an additional and essential component of reintegration. Group interventions that provide semi-structured education and exercise that is inclusive of caregivers has been associated with improvements in both physical and psycho-social outcomes.22,23 Resumption of roles is not without obstacles. For example, there are challenges that the individual who has experienced stroke faces as they consider a return to work. Positive factors that have been associated with return to work include greater independence in ADL, a good match between current capabilities and job tasks, strong family support, setting realistic goals, availability of vocational services, a flexible work environment, white collar work, and availability of disability benefits, yet there are additional risks such as depression.24 Navigating through the continuum of care following stroke has been highlighted as challenging for both patients and caregivers, particularly during the transition from hospital to the community. A number of studies have been conducted to examine the effectiveness of interventions that include the use of an individual who functions as a care coordinator (or case manager or system navigator). In a majority of studies included in the review, there were economic, psychosocial, and functional benefits associated with the system navigation interventions described.25

815 Community Reintegration Recommendations 2016 4.0 Patients and families should be provided with information, support, and access to services throughout transitions to the community following a stroke to optimize the return to life roles and activities [Evidence Level B]. 4.1 Physical and psychological health management following stroke: i. People with stroke living in the community should have access to regular and ongoing medical followup after stroke appropriate to their individual needs, which may address: progress of recovery, preventing deterioration, maximizing functional and psychosocial outcomes, preventing stroke recurrence, and improving quality of life [Evidence Level B]. a. Initial review with primary care provider ought to occur within first two to four weeks following hospital discharge, and address the following: screening patients for ongoing physical issues including dysphagia, nutrition, hydration, continence, and pain, medication review, stroke prevention management, and ongoing follow-up as required [Evidence Level C]. Refer to CSBPR Secondary Prevention of Stroke module for additional information on strategies for the prevention of stroke recurrence.26 b. Primary care providers should screen patients for new or ongoing cognitive concerns, mental health issues (i.e. depression), and psychosocial issues, and manage issues that arise appropriately [Evidence Level B]. Refer to CSBPR Mood, Cognition & Fatigue module for additional information.27 ii. Secondary prevention of stroke should be aggressively managed and risk factor reduction strategies optimized in all settings including long-term care [Evidence Level A]. iii. Referrals to stroke prevention clinics and services should be initiated where appropriate and available at hospital discharge and once back in the community, at the discretion of the primary care provider [Evidence Level C]. iv. It is recommended that infants and children who have experienced a stroke have ongoing surveillance throughout their development, especially if new motor, language, behavioral, or cognitive deficits emerge [Evidence Level B]. a. Developmental screening and assessments may include cognitive, motor, social, behavioral, emotional and physical aspects, as the full extent of stroke-related deficits may not become apparent until different ages and stages of development [Evidence Level C].

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International Journal of Stroke 11(7) Refer to CSBPR Stroke Rehabilitation Module Section 12 for additional information.28

4.2 Functional health management: i. Post stroke patients living in the community who experience a decline in functional status should receive targeted interventions, as appropriate [Evidence Level B], even if the decline occurs many months/years post-stroke. a. It is recommended that processes be in place for stroke survivors to re-access rehabilitation services, if indicated/appropriate, during longer-term recovery [Evidence Level B]. This may include physiatry, physical therapy, occupational therapy, speech therapy, recreation therapy and other services as required to address individual patient needs.28 ii. It is recommended that stroke survivors be monitored for communication capacity and be referred to speech and language services as required to address continuing communication impairments [Evidence Level C].28 4.3 Reintegration to social and life roles following stroke A. Vocations i. It is recommended that patients be asked about vocational interests (i.e. work, school, volunteering) and be assessed for their potential to return to their vocations [Evidence Level C]. a. A detailed cognitive assessment including a neuropsychological evaluation or occupational therapy evaluation, where appropriate and available, is recommended to assist in determining the patient’s ability to meet the needs of their current or potential employment requirements, and contribute to vocational planning [Evidence Level C]. b. A designated member of the care team should provide counseling and information to patients on employment benefits and legal rights. Referral should be initiated as appropriate (such as to a vocational therapist) to assist patients and families in re-engaging in vocational activities as part of transitions to the community [Evidence Level C]. ii. Resumption of vocational interests should be encouraged as tolerated [Evidence Level C]. iii. With consent from the patient and where possible, the healthcare team should work with employers/ educators to devise an appropriate return to work/

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school plan at the request of an employer and/or person with stroke [Evidence Level C]. iv. Review of benefit options related to ongoing financial concerns should be initiated by the healthcare team (e.g. social worker) in hospital and during follow-up for all stroke patients [Evidence Level C]. v. It is recommended that school age stroke survivors in the community have ongoing assessments of educational and vocational needs [Evidence Level C]. B. Leisure activities i. Patients should be asked about pre-stroke leisure pursuits and be assessed for rehabilitative needs to resume these activities. Participation in leisure activities should be encouraged where possible [Evidence Level B]. ii. It is recommended that patients who experience difficulty engaging in leisure activities receive targeted therapeutic interventions and individualized plans for participation in leisure activities based on collaborative goal-setting with their healthcare team [Evidence Level: Adult-Level A; PediatricLevel C]. iii. It is recommended that patients, with their families and caregivers, be encouraged to engage in leisure activities, and prior to discharge be provided with a list of and/or referral to communitybased resources for engaging in ongoing physical, social, emotional, intellectual, and spiritual activities in the community [Evidence Level C]. Refer to Section 2 of this module for additional information. iv. After one month, patients interested in returning to driving should be screened, ideally by an occupational therapist, using valid and reliable methods for any residual sensory, motor, or cognitive deficits [Evidence Level B]. v. It is recommended that children affected by stroke be offered advice and treatment aimed at achieving play and leisure related skills that are developmentally relevant and appropriate in their home, community, and school environments [Evidence Level C]. C. Sexuality i. Patients should be given the opportunity to discuss sexuality and sexual functioning with their healthcare provider. Discussion should occur during acute care, rehabilitation and as the patient transitions back into the community. Verbal and written information should be

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provided and adapted to patients who have communication limitations such as aphasia [Evidence Level C]. ii. Education sessions for patients and/or partners may be considered that address expected changes in sexuality, strategies to minimize sexual dysfunction, and frequently asked questions regarding relationships following a stoke [Evidence Level C].

4.5 Community-based palliative care

D. Disability supports in the community

i. It is recommended that patients and families be provided with information regarding peer support groups in their community, and initial connection with these groups should be encouraged where available [Evidence Level C]. Refer to Sections 1 and 2 of this module for additional information.

i. It is recommended that community-based healthcare professionals across disciplines provide patients, families, and caregivers with information and linkages regarding access to disability support services within their region [Evidence Level C]. a. Healthcare providers should work with patients, families, and caregivers to develop accessibility plan prior to transition to a home or community-based living setting [Evidence Level C]. This plan would incorporate the patient’s functional, communicative, emotional, and/or cognitive deficits following stroke. b. It is recommended that disability legislation and guidelines be explained to patients, families, and caregivers in preparation for transitions; appropriate documentation and applications should be completed by healthcare professionals as required in a timely manner in collaboration with patients and families to minimize delays in access to eligible services [Evidence level C]. c. Designated members of the healthcare team should collaborate with persons with stroke, families, and caregivers to ensure appropriate services and equipment are accessed in a timely manner [Evidence Level C]. 4.4 Reassessment of advance care plans i. The stroke healthcare team is responsible to ensure the patient’s goals of care and advance care planning decisions are reviewed periodically with the patient, family and caregivers, and updated if needed, such as when there is a change in the patient’s health status [Evidence Level B]. a. Advance care planning may include a substitute decision-maker (proxy or agent), and should reflect provincial legislation [Evidence Level C]. b. Advance care planning discussions should be documented in the patient’s chart and on the discharge summary [Evidence Level C].

i. Referral and liaison with community care and hospice services may be coordinated as appropriate based on the patient’s goals of care and condition [Evidence Level C]. 4.6 Family and caregiver support and well-being

Section 5: Transition to long-term care following acute stroke Following a stroke event, despite all rehabilitative efforts, admission to a long-term care facility may be warranted for individuals with high levels of residual disability, particularly for those patients who are older and dependent on others for daily care but have no caregiver.29–31 Reported mortality rates for individuals admitted to a long-term care facility post stroke have ranged from 10.5% at one month after discharge32 to 24% at 5 years and 32% at 10 years.29 Brajkovic et al. reported that individuals living in a nursing home and who received 24-h care (including access to psychiatric care, physician visits, daily physiotherapy and weekly massage services) demonstrated higher quality of physical, psychological, social, and environmental quality of life scores when compared with individuals living in their own homes and who received many of the same services.33 Long-Term Care Recommendations 2016. Note: These recommendations apply specifically to persons with stroke living in long-term care settings. These recommendations are intended to be implemented in addition to standard care (e.g. physical, functional, emotional, cognitive, and social needs) provided in long-term care. Recommendations included in other sections of this module, such as Patient, Family, and Caregiver Support (Section 1) and Patient, Family, and Caregiver Education (Section 2) also apply to this setting. 5.1 Patient assessment and care planning i. All patients who transition to a long-term care setting following a stroke should have an initial

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818 assessment, conducted by medical, nursing, and rehabilitation professionals, as soon as possible after admission [Evidence Level A]. a. A discharge summary along with the care plan should accompany the individual to long-term care [Evidence Level B]. b. It is recommended that the initial assessment of functional status, physical status, and cognitive status be aligned with existing assessment processes (such as the Minimum Data Set-Resident Assessment Inventory (RAIMDS 2.0); or Multi-clientele Autonomy Assessment) where possible [Evidence Level C]. c. Assessment results can be used to modify individualized care plans to optimize quality of life and meet physical, functional, emotional, cognitive, and social needs and goals of people who are admitted to long-term care following a stroke [Evidence Level C]. d. When areas of decline are identified in reassessments, individualized care plans should be updated to incorporate changes in care requirements, address issues of safety, and the potential need for referrals to appropriate healthcare professionals for further consultation [Evidence Level C]. ii. It is recommended that long-term care staff members be educated and knowledgeable in stroke care, maintenance and recovery goals and therapies, and stroke best practice recommendations [Evidence Level C]. Refer to HSF’s Taking Action for Optimal Community and Long Term Stroke Care resource for training content.34 5.2 Rehabilitation and restorative care i. Stroke survivors with ongoing rehabilitation goals should continue to have access to specialized stroke services (such as physiotherapy and occupational therapy) following admission to a community living setting [Evidence Level A], including within a long-term care setting. ii. At any point in their recovery, stroke survivors living in long-term care who have experienced a change/improvement in functional status and who would benefit from new or additional rehabilitation services should be offered a trial of active inpatient or outpatient rehabilitation [Evidence Level B]. iii. Residents in long-term care should have access to recreation therapy, leisure opportunities, and exercise [Evidence Level C].

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International Journal of Stroke 11(7) 5.3 Patient and family support and education i. Provide patients, families, and caregivers with training on how to advocate for active participation in care planning and shared decision-making [Evidence Level C]. ii. Provide patients living in long-term care and their families with information and counseling on appointing an Alternate Decision Maker, developing advance directives for care, and palliative care options as appropriate [Evidence Level C].

Summary The 2016 update of the Canadian Stroke Best Practice Managing Transitions of Care following Stroke Recommendations provide a common set of guiding principles for important aspects of post-stroke care. In focusing on transitions along the continuum of care, we have highlighted the need for improved communication not only between healthcare professional and persons with stroke and their families, but also between the many healthcare providers that must serve the needs of these individuals, families, and caregivers. Enhanced education, training, and active engagement of persons with stroke, their families, and caregivers in integrated care planning and service delivery appear throughout the recommendations as we seek to emphasize the importance of patient- and familycentred service. Unlike many of the other areas of these 2016 recommendations, the areas addressed within the Transitions of Care Recommendations are not supported by randomized controlled trials or meta-analyses. Instead, much of the guidance here is built upon emerging evidence in other forms—observational quantitative and qualitative studies, or a consensus of clinical expertise. That does not make these topics any less important to people who have experienced stroke, and, in fact, these are often the issues that cause higher stress and lead to poor outcomes such as failure to cope, readmissions, or low quality of life.4,35–41 More recent research findings suggest that having a designated healthcare professional such as a stroke navigator working with patients, families, and caregivers throughout discharge and transitions across settings may help to mitigate the potential risks of getting lost in the system or falling through the cracks,25 and enhance knowledge, self-management, and coping following discharge.42,43 The Canadian Stroke Best Practice Recommendations are developed and presented within

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Figure 1. The Canadian Stroke Best Practice Guidelines Transitions of Care Following Stroke Model.

a continuous improvement model and are written for health system planners, funders, administrators, and healthcare professionals, all of whom have important roles in the optimization of stroke prevention and care and who are accountable for results. Several

implementation tools are provided to facilitate uptake into practice (available at www.strokebestpractices.ca), and are used in combination with active professional development programs. By monitoring performance, the impact of adherence to best practices is assessed

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820 and the results are then used to direct ongoing improve ment. Recent stroke quality monitoring activities have compelling results which continue to support the value of adopting evidence-based best practices in organizing and delivering stroke care in Canada. Where appropri ate, we have included a call for research directed at gaps that we identified while reviewing the current body of evidence and where clarity around clinical guidance is much needed. Innovations within these areas of the stroke best practices will contribute to health system reform in Canada and internationally. The Canadian stroke best practice recommendations guidelines continue to be a work in progress and are regularly updated every 2–3 years in order to integrate newly released data to help maximize patient outcomes from this disabling disease. The transition recommendations represent the best available evidence but call for more research addressing this issue. Patients, families, and caregivers require support and assistance to optimize transitions across care contexts and these guidelines provide practical solutions to health care providers.

International Journal of Stroke 11(7) Stephanie Lawrence and Mary Elizabeth Harriman; members of the Canadian Stroke Best Practices and Quality Advisory Committees, Dr Mark Bayley, Dr Eric E. Smith, Dr Edward Harrison, Dr Robert Cote, Dr Michael Hill, Dr Dar Dowlatshahi, Dr Gord Gubitz, Dr Alexandre Poppe, Dr Sam Yip, Dr Denyse Richardson, Dr Colleen O’Connell, Dr Jai Shankar, Dr Alan Bell, Beth Linkewich, Dawn Tymianski, Barbara Campbell, Christina Papoushek, Dr Eddy Lang, Farrell Leibovitch, Dr Michael Kelly, Barbara Ansley, Dug Andrusiek, Dr, Stephen Phillips, Dr Moira Kapral, Dr Michael Sharma, Dr Andrew Demchuk, Dr Devin Harris, Dr Thomas Jeerakithil, and Dr Sol Stern; external reviewers for the 2016 update of the Managing Transitions of Care following Stroke recommendations, including Gavin Arthur, Jen Bogart, Gwen Brown, Marie-Jose´e Gagnon, Dawn Harwood, Janice Hinkle, Philo King, Maureen Markle-Reid, Delia Massey, Andrea Nazarevich, Kristie Peters, Annie Rochette, and Lori Seeley; and our French translators Christelle Desgranges-Farquhar and Roula Abboud.

Declaration of conflicting interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Authors’ contributions JC (primary author) and CO’C (co-primary author) cochaired the Managing Transitions of Care following Stroke expert writing group and are lead authors contributing to all aspects of the development, data analysis, writing, editing and final approval of this manuscript; MPL is corresponding author, and senior editor of the Canadian Stroke Best Practice Guidelines and this manuscript, and writer of supplementary documentation. NF and KS conducted the evidence searches and completed the evidence tables and evidence summaries supporting this guideline update, and also contributed to the writing and editing of this manuscript. RB, RB, DC, NC, HC, AD, PF, JH, PH, EL, SL, TM, JM, TT, and CY are all members of the Managing Transitions of Care following Stroke expert writing group and contributed by reviewing, analyzing and discussing the evidence and collectively finalizing the wording of all the recommendations; DH and RT are the co-chairs of the Canadian Stroke Rehabilitation guidelines and provided input and review of the recommendations and manuscript to ensure consistency across modules. DD and GG are senior advisors to the writing group and contributed significantly to the methodology and recommendation development and provided review and edits to this manuscript; EES provided expert review and edits to the proposed recommendations and manuscript; EG provided coordination and editorial support to the writing group and contributed to the development of supplementary materials.

Acknowledgements The authors wish to acknowledge and thank the many people who provided internal and external review and feedback on earlier drafts of the Managing Transitions following Stroke recommendations update 2016. The stroke and communications team at the Heart and Stroke Foundation, including

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Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The development of the Canadian Stroke Best Practice Recommendations is funded in their entirety by the Heart and Stroke Foundation, Canada. No funds for the development of these guidelines come from commercial interests, including pharmaceutical companies. All members of the recommendation writing groups and external reviewers are volunteers and do not receive any remuneration for participation in guideline development, updates, and reviews. All participants completed a conflict of interest declaration prior to participation.

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