Consensus Panel on the Stroke Rehabilitation System Time is Function Jenn Fearn, Regional Rehabilitation Coordinato

2. Take Home Points What is the Final Report of the Stroke Rehabilitation System Consensus Panel, 2007? What are some of the key highlights of the report? Where/Who can I go to for further information on Outcome Measures and Stroke Rehabilitation Information? What is the North Eastern Ontario Rehabilitation Network (NEORN)?

3. Stroke is a leading cause of death and disability with high health care and human costs ($2.7 billion annual cost to Canadian economy) In Ontario � 24,000 patients present yearly to hospitals with signs and symptoms of stroke and there are at least 90,000 Ontarians living with the effects of stroke In 2005-06 there were 1124 hospital admissions for stroke or stroke related diagnosis in the North East LHIN (CIHI-NACRS data � SEAC Report 2006) Impact and Cost of Stroke

4. Recent Advancements in Stroke Rehabilitation Initiatives The release of HSFO�s Best Practice Guidelines for Stroke Care (transition management, rehabilitation management and community re-engagement) (2003) Evidence-Based Review of Stroke Rehabilitation (EBSRB) Dr. R. Teasell � London, ON (2003 to present) Recommendations from the 6 stroke rehabilitation pilot projects (2004) Documentation of new evidence on the efficacy and cost-effectiveness of stroke rehabilitation (ongoing) The approval and funding of the Community and LTC Specialist (2004) and the Rehabilitation Coordinator (2005) positions across the stroke regions Canadian Stroke Strategy � Best Practice Recommendations (2006)

6. Specifically, the Panel was formed to: Describe and define the components of the Stroke Rehabilitation System in Ontario Identify components of a Service Provision Model (triage system) Develop stroke rehabilitation Standards Select the common assessment tools Take initial steps in the development of a province-wide data system for stroke rehabilitation Make Recommendations to move the stroke rehabilitation agenda forward

7. Vision for Stroke Rehabilitation in Ontario Individuals who experience a stroke will have timely access to the appropriate intensity and duration of rehabilitation services. These services will be provided in a comprehensive and coordinated way to patients and families, by agencies and health care providers who are expert in stroke care and practice rehabilitation principles.

8. Definition of �Rehab Ready� The Panel defined 5 criteria for determining whether a stroke survivor is ready to begin rehabilitation outside the acute care setting, they are: 1. Readiness for D/C from acute care, 2. Medical stability, 3. Ability to learn, 4. Ability to participate, and 5. Consent. pp53-54 1. Readiness for Discharge from Acute Care Before the stroke survivor can begin post-acute stroke rehabilitation, the probable cause of the stroke should have been determined, or at least explored (in the event the cause cannot be definitively determined). Using this information, a secondary prevention strategy should have been initiated prior to discharge from acute care. 2. Medical Stability Post-acute stroke rehabilitation can only begin once the patient is medically stable. For the purpose of initiating rehabilitation outside of the acute care environment, the Panel has defined medical stability as follows: � A clear diagnosis and co-morbidities have been established. Co-morbidities and health issues are being managed. � Acute medical issues have been addressed. � All medical investigations have been completed or initiated. � Disease processes and/or impairments do not preclude participation in a rehabilitation program. 3. Ability to Learn The ability to learn is a necessary prerequisite for successful rehabilitation. The stroke survivor must demonstrate both an ability to have carry-over of learning and comprehension sufficient to achieve rehabilitation goals. The assessment of the ability to learn must involve the appropriate rehabilitation professionals. For example, neuropsychologists, physiotherapists, occupational therapists and speech-language pathologists can all provide important testing and insight into a stroke survivor�s cognitive ability and ability to learn. For stroke survivors with aphasia and for those do not speak or understand English or French, appropriate communication strategies as well as clinical judgment should be employed to determine the ability to learn. Determining the stroke survivor�s ability to learn is often not a one-time assessment and might require that the rehabilitation team periodically reassess the stroke survivor�s ability to learn. This may require the specialized skills of a psychologist or neuropsychologist. 4. Ability to Participate The stroke survivor must be able to demonstrate an ability to participate in rehabilitation programs intended to restore function. When behavioural or active psychiatric issues are present, the behaviour or conditions must be managed with appropriate strategies. Behaviour problems as a result of stroke may be amenable to intervention. The frequency and severity of depression among stroke survivors is a significant barrier to the rehabilitation process if not adequately addressed. Regular screening and access to psychiatric supports, if required, are essential. 5. Consent The stroke survivor must be informed regarding the rehabilitation program and must have consented to participate. If the stroke survivor is deemed to be incapable to consent to the treatment plan, consent must be obtained from the substitute decision maker. pp53-54 1. Readiness for Discharge from Acute Care Before the stroke survivor can begin post-acute stroke rehabilitation, the probable cause of the stroke should have been determined, or at least explored (in the event the cause cannot be definitively determined). Using this information, a secondary prevention strategy should have been initiated prior to discharge from acute care. 2. Medical Stability Post-acute stroke rehabilitation can only begin once the patient is medically stable. For the purpose of initiating rehabilitation outside of the acute care environment, the Panel has defined medical stability as follows: � A clear diagnosis and co-morbidities have been established. Co-morbidities and health issues are being managed. � Acute medical issues have been addressed. � All medical investigations have been completed or initiated. � Disease processes and/or impairments do not preclude participation in a rehabilitation program. 3. Ability to Learn The ability to learn is a necessary prerequisite for successful rehabilitation. The stroke survivor must demonstrate both an ability to have carry-over of learning and comprehension sufficient to achieve rehabilitation goals. The assessment of the ability to learn must involve the appropriate rehabilitation professionals. For example, neuropsychologists, physiotherapists, occupational therapists and speech-language pathologists can all provide important testing and insight into a stroke survivor�s cognitive ability and ability to learn. For stroke survivors with aphasia and for those do not speak or understand English or French, appropriate communication strategies as well as clinical judgment should be employed to determine the ability to learn. Determining the stroke survivor�s ability to learn is often not a one-time assessment and might require that the rehabilitation team periodically reassess the stroke survivor�s ability to learn. This may require the specialized skills of a psychologist or neuropsychologist. 4. Ability to Participate The stroke survivor must be able to demonstrate an ability to participate in rehabilitation programs intended to restore function. When behavioural or active psychiatric issues are present, the behaviour or conditions must be managed with appropriate strategies. Behaviour problems as a result of stroke may be amenable to intervention. The frequency and severity of depression among stroke survivors is a significant barrier to the rehabilitation process if not adequately addressed. Regular screening and access to psychiatric supports, if required, are essential. 5. Consent The stroke survivor must be informed regarding the rehabilitation program and must have consented to participate. If the stroke survivor is deemed to be incapable to consent to the treatment plan, consent must be obtained from the substitute decision maker.

9. Categories of the Severity of Stroke For the purpose of the Panel�s standards, the severity of a stroke is categorized according to early assessment (i.e., within five to seven days) results as follows: � Mild stroke is defined as an early total function score of greater than 80 and motor function score of greater than 62, using the FIMTM instrument. � Moderate stroke is defined as an early total function score of 40 to 80 and motor function score of 38 to 62, using the FIMTM instrument. � Severe stroke is defined as an early total function score of less than 40 and motor function score of less than 38, using the FIMTM instrument. For the purpose of the Panel�s standards, the severity of a stroke is categorized according to early assessment (i.e., within five to seven days) results as follows: � Mild stroke is defined as an early total function score of greater than 80 and motor function score of greater than 62, using the FIMTM instrument. � Moderate stroke is defined as an early total function score of 40 to 80 and motor function score of 38 to 62, using the FIMTM instrument. � Severe stroke is defined as an early total function score of less than 40 and motor function score of less than 38, using the FIMTM instrument.

10. Service Provision Model

11. Service Provision Model

12. Moderate Stroke

13. Moderate Stroke

14. Standards

15. Standards for Stroke Rehabilitation Overarching Principles Stroke survivors will have timely, equitable and consistent access to coordinated rehabilitation services. Rehabilitation at all points along the care continuum will be evidence based where evidence is available and be provided by appropriate rehabilitation professionals and other health care providers with expertise in stroke rehabilitation. An interprofessional model of care will be used when assessing and treating all stroke survivors.

16. Classifying the Standards 4 Main Areas Education Best Practice Stroke Care System Navigation Regional System of Care

17. Specific Standards of Interest to NEO Clinicians

18. Standards - Education Standard #5: Stroke related impairments and functional status will be evaluated by rehabilitation professionals trained in stroke rehabilitation using standardized, valid assessments. Recent Project to Achieve Standard: Two workshops were offered in Sudbury on October 27 & 28, 2007 for occupational therapists and physiotherapists on the following recommended assessments: Chedoke-McMaster Stroke Assessment Chedoke Arm and Hand Activity Inventory

19. National Expert Consensus Panel for Outcome Measurements Post-Stroke

20. Canadian Best Practices in Stroke Rehabilitation Outcomes Conference Held February 6-7, 2006 Goals: Through discussion with Canadian Stroke Network and the Heart and Stroke Foundation of Ontario, it was agreed that an expert consensus panel with representatives from relevant health professionals as well as stakeholders would be an important method for establishing a course of rehabilitation outcome measures to be used across the continuum.

21. Conference Chairs Dr. Mark Bayley, Dr. Patrice Lindsay Membership Dr. Nicol Korner-Bitensky, Dr. Robert Teasell, Dr. Johanne Desrosiers, Dr. Jeff Jutai, Alison MacDonald, Katherine Salter, Dr. Sharon Wood-Dauphinee, Nancy Deming. Canadian Best Practices in Stroke Rehabilitation Outcomes

22. Objectives Using the International Classification of Functioning to prioritize a set of outcome measures in the domains of body structure and function, activity and participation that could be used to evaluate the outcome of stroke rehabilitation in Canada. Identify preliminary indicators of performance of the stroke rehabilitation system. Canadian Best Practices in Stroke Rehabilitation Outcomes

23. Criteria Suggested to Facilitate Selection: The measure should have been used in previous stroke trials as identified by the Stroke Rehabilitation Evidence-Based Review. The measure can be used at admission and completion of rehabilitation. The measure can be administered in a multidisciplinary fashion � i.e., could be administered by a number of different health professionals. Canadian Best Practices in Stroke Rehabilitation Outcomes

24. The measure should have optimal psychometric properties including reasonable reliability and demonstrated validity. The measure should be available in English and French. The time required to complete the measure should fit within the context of the usual assessment time of a health care professional (i.e., is not excessively burdensome). All Measures Selected Also Considered: Ease and feasibility of administration; Content of the measure; Reliability, Validity and Responsiveness. Canadian Best Practices in Stroke Rehabilitation Outcomes

25. Appendix M: Outcome Measures

26. Canadian Best Practices in Stroke Rehabilitation Outcomes Measures of Stroke Severity Medical Co-morbidities Upper Extremity Structure and Function Lower Extremity Spasticity Visual Perception Language Speech Intelligibility Tool Cognition Arm Function Walking/Lower Extremity Balance Functional Communication Self-Care Activities of Daily Living Instrumental Activities of Daily Living Participation

27.

28. Standards - Education Standard #12a: The interprofessional team will have access to stroke rehabilitation education and professional development modules in order to support the standards and other evidence-based practice initiatives. These educational opportunities will be evidence-based, current and user-friendly and will incorporate knowledge translation strategies. Resources: Stroke Rehabilitation Resource Guide available at: http://profed.heartandstroke.ca/ (Ontario Stroke System - Stroke - Professional Resources - Stroke Rehabilitation Resource Guide)

30. Ambulation/Mobility Aphasia & Other Communication Impairments Assessment & Outcome Measures Cognitive, Perceptual & Behavioural Problems Community Re-engagement Continence Depression & Mood Driving Dysphagia and Nutrition Pain Pediatric Stroke Pusher Syndrome Recreation Rehabilitation Sexuality Survivor & Caregiver Support & Education Transition Management Upper Extremity Web Resources

31. Standards - Education Standard #12b: Stroke survivors, family/caregivers and volunteers should be provided with information and education at all stages of care across the continuum (prevention, acute care, rehabilitation, community reintegration). It should address: the nature of stroke and its manifestations, signs and symptoms, impairments and their impact and management, risk factors, planning and decision making, resources and community support. Possible Projects or Initiatives: Inpatient and family education programs, Living with Stroke, Moving on After Stroke (MOST), Stroke Survivor Canada

32. Standards - Education Standard #6: The interprofessional team will develop a comprehensive rehabilitation plan with each stroke survivor that reflects the severity of the stroke, the needs and goals of the stroke survivor, and the family/caregiver and home environment. Possible Projects or Initiatives: Explore the feasibility of the potential use of the NEO Video Stroke Network to assist small hospitals with treatment advice/options or to discuss complicated cases.

33. Standards � Best Practice Stroke Care Standard #11: Therapy will include repetitive and intense use of novel tasks that challenge the stroke survivor to acquire necessary skills during functional tasks and activities. The interprofessional team, along with the family/caregiver and volunteers, will promote the practice of skills gained in therapy into the stroke survivor�s daily routine and will reinforce increased stroke survivor participation and activity. Possible Projects or Initiatives: Workshops, Inservices, Rounds with respect to �novel tasks�

34. Standards � Best Practice Stroke Care Standard #16: Stroke survivors who are discharged to the community with home-based stroke rehabilitation services will be provided with these services as per available evidence-based guidelines. Current Projects or Initiatives: Stats are being collected from all 6 branches of the NE CCAC including West Parry Sound. The data is being compared to the Community and Stroke Best Practice Guidelines (2005) In future, target CCAC case managers with further education.

35. Standards � System Navigation Standard #17: Interprofessional teams will facilitate linkages for stroke survivors and their family/caregivers after discharge to services in the community. Current Projects or Initiatives: Stroke Community Resource Guides Developed in each district outlining stroke and/or stroke related services available in the community (e.g. CCAC contact info, Driving Eval. info, Rehab Services, etc.) Collaborative Workshops offered across NEO Involve the partnership between the Psychogeriatric Resource Consultants, the Regional Best Practice Coordinator for LTC and the NEO Stroke Network Community and Long-Term Care Specialist. These workshops provide an opportunity to network, learn more about community resources and how to combine various initiatives to address the needs of clients.

36. Selected Management/System Level Standards the NEO Clinician Should Be Aware Of

37. Selected Management/System Level Standards Standard #13: All stroke survivors, regardless of where they live, will have equitable access to the same standard of care at the appropriate intensity and duration. Standard #19: Each stroke region will have an explicit stroke rehabilitation service provision model in place in order to facilitate optimal and timely access to rehabilitation services. Standard #20: Clinical and service utilization data will be used to plan, coordinate, integrate and prioritize regional stroke rehabilitation services and ensure equitable access based on patient need.

38. Evaluation of the Standards As the stroke rehabilitation community begins to implement the standards proposed in this report, health care providers, administrators and funders will need to: Understand how well the system (or region) is performing against the established standards. Analyze what has changed for stroke survivors, in both qualitative and quantitative terms, once the standards have been implemented. Determine whether stroke survivors were able to access the recommended services, which services were accessed, and what barriers to access still exist within and across regions and LHINs.

39. Recommended Next Steps To Move The Rehabilitation Agenda Forward Adopt the Standards (3 Recommendations) Create Needed Capacity to Deliver Stroke Rehab (2 Recommendations) Develop Regional Systems (3 Recommendations) Take Action to Relieve the Human Resource Shortage (1 Recommendation) Facilitate Evaluation and Research (2 Recommendations)

40. Development of Regional Systems Recommended Next Steps That each Stroke Region work in conjunction with its respective Local Health Integration Network in: Developing and implementing a plan based on the Panel�s standards in order to meet the service needs of stroke survivors in their area (Recommendation 6) Developing a process for referral to the appropriate services and tracking where and when the appropriate service does not occur (Recommendation 7) Developing stroke rehabilitation service capacity to meet the Panel�s standards and in facilitating interorganizational agreements that support having the right person in the right place at the right time (Recommendation 8)

41. North Eastern Ontario Rehabilitation Network

43. Work Accomplished to Date Information sharing Admission criteria for designated rehabilitation beds Utilization data related to admission and D/C data Compiling resource inventory (e.g. inpatient, outpatient, day-hospital services and FTE�s associated with these services) Sharing educational information Developed Terms of Reference Draft Vision, Purpose, Objectives, Accountability and Responsibility, etc.

44. Meeting with the NE LHIN Oct 1, 2007, 3 members of the NEO Stroke Network met with the NE LHIN senior management team Case was made for more rehabilitation beds Proposed the concept of a regional rehabilitation database (electronic tracking record) NEO Rehabilitation Network was explained and we asked for the NE LHIN�s endorsement of the NEORN workplan

45. North Eastern Ontario Rehabilitation Network Workplan Create an established link with the NE LHIN � to develop capability to advise on rehabilitation practice, policy and funding Establish linkages/communication between acute care, inpatient rehab beds, and community-based rehabilitation providers in NEO Common referral form for rehabilitation across all NEO Rehab Beds � this will lead to the use of a common language and common assessment information Develop transparent guidelines for rehabilitation referral process (that address geography and patients with special needs) and repatriation agreements between organizations Use of telemedicine for consultation/assessment and educational opportunities Development and sustainability of a NE Rehabilitation Resource Directory Improved dissemination of rehabilitation best practices through a coordinated regional rehabilitation education system/function

46. Some Useful Links StrokEngine http://www.medicine.mcgill.ca/Strokengine/ Evidence-Based Review Of Stroke Rehabilitation(EBRSR) http://www.ebrsr.com/ Heart and Stroke Foundation of Ontario (HSFO) (Prof. Ed. Section under revision at present) http://profed.heartandstroke.ca/ Northeastern Ontario Stroke Network Website www.neostrokestrategy.com

47. NEO Regional Stroke Best Practice Consultant Team & Discussion Forum

48. Contact Info Jenn Fearn Regional Rehabilitation Coordinator jfearn@hrsrh.on.ca Darren Jermyn Regional Program Manager djermyn@hrsrh.on.ca