Needs Assessment and Plan for Integrated Stroke Rehabilitation in the GTA February, 2002

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2 Funding for this project has been provided by the Ministry of Health and Long-Term Care as part of the Ontario Integrated Stroke Strategy It should be noted that the opinions expressed are those of the authors and no official endorsement by the Ministry is intended or should be inferred. Greater Toronto Area Rehabilitation Network 550 University Avenue, Room 1114 Toronto, Ontario M5G 2A2 Telephone: (416) Facsimile: (416) Web Site: M.S. Monahan & Associates Inc., and

3 Table of Contents Page Executive Summary i 1.0 Introduction Background Objectives Approach Communications Planning Population Analysis Incidence of Stroke Stroke Categorization Scheme Planning Assumptions Vision for Stroke Rehabilitation Focus Group Discussions Vision for Stroke Rehabilitation in the GTA Current Situation for Stroke Rehabilitation in the GTA Discharge Disposition of Stroke Patients from Emergency Discharge Disposition of Acute Care Stroke Patients Stroke Survivors Receiving Home Care Service Inventory of Rehabilitation Beds in the GTA Plan for Integrated Stroke Rehabiltation in the GTA A Systems Approach Process Elements of the Stroke Rehabilitation System Best Practice Standards Common Assessment Tools Common Triage Tools and Processes Common Data Support Elements 23 (continued) M.S. Monahan & Associates Inc., and

4 9.3 Components of the Stroke Rehabilitation System Inpatient Stroke Rehabilitation Components Ambulatory Stroke Rehabilitation Components Issues Unique to Stroke Rehabilitation in the GTA Linkages Across and Beyond the GTA Implementation Considerations Summary 29 Appendices Membership of the GTA Stroke Strategy Rehabilitation Task Group Summary of GTA Regional Stroke Centres, Stroke Rehabilitation Pilot Project Submissions Organizations Represented in Focus Group Discussions Summary of the Focus Group Discussions Detailed Data, Emergency Room Contacts Detailed Data, Survivors Receiving Home Care Service Centres in the GTA offering ambulatory, interdisciplinary Stroke Rehabilitation Appendix A Appendix B Appendix C Appendix D Appendix E Appendix F Appendix G M.S. Monahan & Associates Inc., and

5 Executive Summary EXECUTIVE SUMMARY In June 2000 the Minister for Health and Long-Term Care announced a comprehensive stroke strategy for the province and a commitment of $30 million. In February 2001, six Regional Stroke Centres were identified, including three in the GTA. Regional Stroke Centres have the leadership responsibility to promote the development of regional stroke rehabilitation systems. As a next step in the development of regional stroke rehabilitation systems the MOHLTC has provided funding for the GTA Rehabilitation Network to conduct a needs assessment and develop a plan for a system of coordinated stroke rehabilitation services in the GTA. The GTA Rehabilitation Network selected Monahan & Associates, in collaboration with the, to work with a task group, to achieve the expected goals and outcomes of this initiative. The body of this report details the objectives, approach, findings and recommendations developed as part of the collaborative work between the GTA Rehabilitation Network and the Task Group selected to conduct a needs assessment and develop an integrated plan for stroke rehabilitation in the GTA. Population Analysis Population data were analyzed in five-year cohorts, by gender. Population figures have been defined for the city of Toronto and at the county level for Halton, Peel, York and Durham. The GTA population estimates for 2008 reveal: A total population of 5.8 million, a 14% increase in the population since 2000; Significant increases in the percentage of the population 80 years and over, and; Females forming a higher proportion of the population in the upper age groups. Incidence of Stroke The incidence of stroke in the GTA has been based on inpatient separations, reported by Ontario hospitals to the Canadian Institute for Health Information (CIHI), for fiscal year The population included those separations with a residence code in the GTA. The stroke incidence data reveal: A progressive increase in the incidence of stroke, for both men and women, after 65 years of age; A higher incidence of stroke in the male population; M.S. Monahan & Associates Inc., and i

6 Executive Summary A high proportion of females in the stroke population, when incidence data are applied to the population data; and An increase of 33.2% in the number of strokes, in the GTA, between 2000 and Stroke data sources Data sources used for this analysis included: Acute care and rehabilitation abstracts, as prepared by CIHI; Chronic care abstracts with evidence of rehabilitation service; Emergency visit data as prepared by CIHI; Home Care data as prepared by the MOHLTC: and Inventory data for rehabilitation beds as prepared by the GTA Rehabilitation Network. In , there were 10,320 acute care admissions for stroke in the GTA. Of this total, 8,355 were stroke survivors. Emergency visit data suggests that a total of 8,454 visits to Emergency were as a result of stroke. Approximately 66% of these encounters resulted in hospitalization and 2,826 were treated and released from the Emergency department. On an annual basis, the number of stroke survivors in the GTA exceeds 11,000 (8,355 treated in hospital + 2,826 treated in the Emergency department and released). Stroke Categorization Scheme The stakeholder consultation group and review of the literature identified the importance of assessing rehabilitation potential and planning for rehabilitation according to the severity of the stroke. The body of this report details the approach used to categorize acute care stroke patients. Applying this categorization algorithm to the 10,320 individuals with a stroke diagnosis, discharged from a Toronto/GTA hospital in fiscal year 2000/2001, produced the following distribution of stroke patients by category: Low 2,205 cases 21.4% Medium 5,019 cases 48.6% High 3,096 cases 30.0% M.S. Monahan & Associates Inc., and ii

7 Executive Summary While the proposed categorization approach is not a direct measure of stroke severity we believe that it can be used with CIHI acute care data to establish categories of strokes that can be considered to be valid surrogate measures of stroke severity, and therefore rehabilitation needs and potential Disposition for stroke survivors Overall patient disposition, for stroke survivors in the GTA, following acute care in was: 49.4% discharged home without home care; 17.7% transferred to inpatient rehabilitation; 11.6% transferred to a Nursing Home (NH) or Home for the Aged (HFA) 11.2% transferred to Home Care; and 2.1% transferred to another acute care facility. These data reveal significant differences in the discharge disposition for Toronto residents as compared to those from Halton, Durham, Peel and York. In Halton, Durham, Peel and York, 20% - 24% of stroke survivors who were admitted to acute care are transferred to rehabilitation whereas in Toronto less that 15% are transferred to rehabilitation; and Referral to NH/HFA ranges between 4% and 9% in Halton, Durham, Peel and York whereas it is over 15% in Toronto. Plan for Integrated Stroke Rehabilitation in the GTA At the present time there is no formalized system for stroke rehabilitation in the GTA. Significant time and resource has been invested, as part of the Ontario Stroke Strategy, to enhance the organization and system for acute stroke care. This direction is seen as an essential pre-requisite to the development of a system for stroke rehabilitation. Based on anecdotal comment, the current approach to stroke rehabilitation in the GTA: Is not equitable for all residents; Does not assess all stroke patients for rehabilitation; Limits access due to admission criteria and length of stay targets; and Often results in inappropriate placement following acute care.. A Systems Approach for Stroke Rehabilitation in the GTA The Task Group selected a systems approach to plan for stroke rehabilitation in the GTA. On an annual basis, in the GTA, there is a need to assess and determine the rehabilitation needs of more than 11,000 stroke survivors. M.S. Monahan & Associates Inc., and iii

8 Executive Summary The systems model is conceptualized as having: INPUTS: GTA residents, who survive a stroke, as documented through acute care admission or visit to the emergency department. PROCESS: Elements of the system that standardize best practice standards, assessment tools, triage tools and systems that support common data elements. OUTPUTS: Components of the stroke rehabilitation system which include a broad continuum of ambulatory services, inpatient programs as well as a combination of services supporting reintegration back into the community. Planning Assumptions The planning assumptions developed by the Task Group and used in the development of plans for integrated stroke rehabilitation in the GTA are as follows: Assumption #1: Assumption #2 Assumption #3 Assumption #4 Assumption #5 Assumption #6 For the purposes of this project the Task Group determined that the role of the public sector would be the major focus for review and analysis. The continuum of stroke care was used as a basis for considering the development of a plan for stroke rehabilitation in the GTA. The therapeutic and treatment components of the continuum of care would form the major focus of this project, recognizing that community reintegration and life participation are a logical extension of a rehabilitation model. The adult population would be the focus for the development of a plan for stroke rehabilitation in the GTA. The planning boundary used for development of stroke rehabilitation plans has been the GTA. Regional Stroke Centres are accountable for the development of stroke rehabilitation services and they will work with the GTA Rehabilitation Network, as the facilitating body, for those system elements, which impact stroke rehabilitation across the GTA. M.S. Monahan & Associates Inc., and iv

9 Executive Summary Vision for Stroke Rehabilitation The vision for Stroke Rehabilitation in the GTA has been based on review of the background documentation and significantly influenced by: Stroke Rehabilitation Consensus Panel Report 1 ; Current Status of Rehabilitation in the GTA 2 ; Focus Groups Sessions conducted in the fall 2001; and Data analysis of the discharge disposition from acute care. The vision for Stroke Rehabilitation, in the GTA, is based on the following principles: PATIENTS will move freely across the GTA in order to have timely access to the appropriate intensity and duration of rehabilitation service. SERVICES in the GTA will become differentiated to meet distinctly different levels of stroke rehabilitation so as to provide care in a comprehensive and coordinated manner. PROVIDERS of stroke care in the GTA, acute and rehabilitation, will work together to ensure that practitioners are expert in stroke rehabilitation and demonstrate best practice principles. INFORMATION to define the needs for stroke rehabilitation will be available on a timely and accurate basis. This will include patient data as well as service and capacity data. SYSTEM components and processes will become transparent. TECHNOLOGY to support the continuum of needs for stroke care will be advanced. RESEARCH and EDUCATION will inform and advance the provision of stroke care. HEALTH CARE RESOURCES will be required in sufficient quality and quantity to support the system. Summary of Recommendations The Task Group recommends that: 1 Heart and Stroke Foundation of Ontario. Stroke Rehabilitation Consensus Panel Report, May GTA Rehab Network. Current Status of Rehabilitation in the GTA, Clinical Committees Survey Report, June M.S. Monahan & Associates Inc., and v

10 Executive Summary RECOMMENDATIONS (1) Strategies be developed to understand and address the needs of the population that seek Emergency care for stroke and are not admitted to hospital. (2) Regional Stroke Centres take the leadership to ensure pre-discharge assessment; for secondary prevention, rehabilitation and home support services, of all stroke patients going home, (3) Best Practice Standards be used, to achieve greater standardization in stroke care practice, across the GTA. (4) GTA Regional Stroke Centres, with representation from the continuum of stroke care providers, formalize an ongoing working structure, facilitated through the GTA Rehabilitation Network, to adapt the provincial Best Practice Standards, for implementation across the GTA. (5) Common Assessment Tool(s), that are compatible and portable, across the continuum of stroke care, be implemented in the GTA. And further that (6) The MOHLTC mandate the use of an alpha FIM measure, in acute care, to enhance consistent stroke care practice. (7) Building upon the stroke rehabilitation pilot project at University Health Network, Toronto Western Hospital; the GTA Regional Stroke Centres, facilitated through the GTA Rehabilitation Network, work with care providers, across the continuum, to implement Common Assessment Tool(s). (8) A Common Triage Tool be developed/refined for consistent use, across the continuum of stroke care, in the GTA. (9) The GTA Regional Stroke Centres, in collaboration with stroke care providers, and facilitated through the GTA Rehabilitation Network implement a Common Triage Tool across the GTA. And further that: (10) Common Triage Processes be developed within the GTA through the collaborative efforts with the Regional Stroke Centres, regional rehabilitation centres, representation from the continuum of care and facilitated through the GTA Rehabilitation Network. (11) Key data elements, for those who suffer stroke, including the capture of regional data; be implemented to manage patient flow and system demands for stroke care and rehabilitation within the GTA. M.S. Monahan & Associates Inc., and vi

11 Executive Summary (12) The MOHLTC formally integrate the following programs, of stroke rehabilitation, into its planning framework: Programs for high intensity-short duration rehabilitation; Programs for highly specialized and complex rehabilitation; and Programs for low intensity-long duration rehabilitation. (13) The GTA Rehabilitation Network in collaboration with the Regional Stroke Centres, take the leadership to work with providers of regional stroke rehabilitation service to initiate planning activity for a program of highly specialized and complex stroke rehabilitation. This includes target populations, service components and resource requirements. (14) The GTA Rehabilitation Network in collaboration with the Regional Stroke Centres, take the leadership to work with providers of complex continuing care to initiate planning activity for a program of low intensitylonger duration stroke rehabilitation. This includes target populations, service components and resource requirements. (15) Determination of the number of inpatient beds required, to adequately support stroke rehabilitation, be undertaken after consistent assessment and triage tools have been implemented across the GTA. (16) The MOHLTC, with the appropriate partnerships, address the funding for stroke rehabilitation, and make adjustments to recognize differentiated levels of program. (17) The GTA Rehabilitation Network conduct a detailed inventory of therapeutic ambulatory services, which support stroke rehabilitation in the GTA. And further that: (18) Study of ambulatory stroke rehabilitation models, including the West GTA pilot stroke rehabilitation pilot project, be undertaken by the GTA Rehabilitation Network as a basis to enhance access to care and to provide alternatives to inpatient stroke rehabilitation. (19) Formalized agreements be structured between all stroke rehabilitation providers and acute care centres, in the GTA. These agreements would outline major responsibilities and facilitate patient movement along the continuum of stroke care. (20) The GTA Network, with the necessary resources, work with the continuum of stroke care providers to facilitate the development of system elements which impact stroke rehabilitation, in the GTA. M.S. Monahan & Associates Inc., and vii

12 Executive Summary (21) Programs for stroke rehabilitation in the GTA be structured to recognize the cultural diversity of those served, including: - access to services in French; - access to signing; - access to written materials in the language of populations served; - access to interpretation; and - staff training to accommodate the needs of a multicultural population. (22) The GTA Rehabilitation Network, establish a GTA working group, with representation across the continuum of stroke care, to coordinate the implementation of recommendations contained in this report. Linkages Across and Beyond the GTA In working to implement an integrated stroke rehabilitation system in the GTA the following linkages have been identified: MOHLTC and the Project Manager, Integrated Provincial Stroke Strategy, to link pilot projects and overall integration of stroke initiatives; Regional Stroke Centres Forum, convened by HSFO, to provide a provincial, national and international connection to stroke care, education, research and management. Linkages with the various DHCs to facilitate the integration of stroke rehabilitation, in an organized manner; GTA Rehabilitation Network linkage with the establishment of a standing Stroke Committee to consider those initiatives that impact the GTA. Implementation Considerations It is expected that up to five years will be required, to implement the recommendations contained within this document. A table, in the body of this report, illustrates the estimated timeframe and inter-related activity required to implement the recommendations contained in this report. The timeframes are ambitious and will be dependent upon available resources. Summary The Task Group determined that a plan for stroke rehabilitation in the GTA required a system that was comprehensive, along the entire continuum, and one that was based on the application of best practices. Recommendations in this report address the essential elements required to develop a systematic approach to the assessment and determination of the appropriate type of stroke rehabilitation. M.S. Monahan & Associates Inc., and viii

13 Executive Summary The GTA currently has three Regional Stroke Centres and more may be added in the future. In terms of the development of a system for stroke rehabilitation it was recognized that the Regional Stroke Centres needed to work collaboratively. The Regional Stroke Centres have identified the GTA Rehabilitation Network, as the facilitating body, to provide the forum for planning common system elements that impact stroke rehabilitation across the GTA. The Regional Stroke Centers in the GTA working with the regional rehabilitation centres, the continuum of stroke care providers and the GTA Rehabilitation Network are committed to implementing the recommendations contained in this report. M.S. Monahan & Associates Inc., and ix

14 1.0 Introduction Over the past 3 years the rehabilitation sector has received increased attention in terms of planning for delivery of health services. This interest has been associated with the restructuring of the health care system in Ontario, the creation of networks such as the GTA Rehab Network and the expanded work of groups such as the Heart and Stroke Foundation of Ontario (HSFO). The Ministry of Health and Long Term Care (MOHLTC) has made significant commitment to the policy and planning initiatives for the delivery of rehabilitation services in the province. The Toronto District Health Council has supported the Ministry directions and worked to translate policy directives into new strategies for the delivery of health care services. 1.1 Background The GTA Rehabilitation Network was established in 1998, on the recommendation of the Health Services Restructuring Committee (HSRC). The network represents a collaborative association of organizations interested in the planning and provision of rehabilitation services. Initial efforts were focused on the definition of common needs, such as consistent information, across all sectors and an initial inventory of rehabilitation programs and services in the GTA. Concurrent with the development of the GTA Rehabilitation Network, organizations such as the Heart and Stroke Foundation have begun to play a significant role influencing the manner in which stroke and rehabilitation services are provided. In June 2000 the Minister for Health and Long-Term Care announced a comprehensive stroke strategy for the province and a commitment of $30 million. The strategy is outlined in Towards an Integrated Stroke Strategy for Ontario. 1 The strategy incorporates the Stroke Rehabilitation Consensus Panel Report 2 released by the HSFO in May In February 2001, six Regional Stroke Centres were identified, including three in the GTA. Regional Stroke Centres have the leadership responsibility to promote the development of regional stroke rehabilitation systems. As a next step in the development of regional stroke rehabilitation systems the MOHLTC has provided funding for the GTA Rehabilitation Network to conduct a needs assessment and develop a plan for a system of coordinated stroke rehabilitation services in the GTA. The GTA Rehabilitation Network selected Monahan & Associates, in collaboration with the, to work with a task group, to achieve the 1 Ministry of Health and Long-Term Care and the Heart and Stroke Foundation of Ontario. Report of the Joint Stroke Strategy Working Group, June Heart and Stroke Foundation of Ontario. Stroke Rehabilitation Consensus Panel Report, May M.S. Monahan & Associates Inc., and 1

15 expected goals and outcomes of this initiative. Membership of the GTA Stroke Strategy Rehabilitation Task Group appears in Appendix A. 1.2 Objectives The overall objective for this engagement was to assist the GTA Rehabilitation Network to conduct a needs assessment and to develop a plan for a system of coordinated stroke rehabilitation services in the GTA. Specifically the objectives were to: Work with the project team to develop the detailed workplan, and task activities to achieve the project deliverables; Guide the methodology used to achieve the project goals; Examine background information and inventory data previously collected; Design new data collection tools or survey instruments; Analyze additional data collected; Facilitate communication activities with the Task Group and the stakeholder consultation group; and Document the analysis and prepare the final report for this project. 2.0 Approach The approach to conducting this project included the following elements: Review Background Data and Documentation; Assist with development of a Communications Plan; Review Experience in Other Jurisdictions; Conduct Focus Group Sessions; Analyze Population data; Determine Population Size for Stroke Rehabilitation; Review Inventory Data; Define Current Situation for Stroke Rehabilitation in the GTA; Develop Model for Integrated Stroke Rehabilitation in the GTA; Identify Support Elements for the Integrated Model; and Prepare 3.0 Communications Planning The GTA Rehabilitation Network has developed a database that includes key stakeholders involved in the planning and delivery of rehabilitation services. At regular intervals, key stakeholders received information related to the planning, approach and status of this initiative. M.S. Monahan & Associates Inc., and 2

16 At the outset of this project two additional Regional Stroke Centers had been identified in the GTA. As the Stroke Coordinators for the additional Regional Stroke Centers were selected, they became participants in the Needs Assessment Task Group. The MOHLTC requested the three Regional Stroke Centers to develop proposals for pilot projects and submit them in late November The intent was to conduct work that could be of benefit to all Centres and would not duplicate preliminary efforts. Appendix B contains a summary of the pilot project proposals submitted by the GTA Regional Stroke Centres to the Ministry of Health and Long-Term Care. The Needs Assessment Task Group has integrated an understanding of the pilot projects in its deliberations and development of recommendations. The MOHLTC also requested the Toronto DHC to develop recommendations related to the determination of District Centres for stroke care in the GTA. The results of this work have been reviewed and considered in terms of the development of plans for integrated stroke rehabilitation services in the GTA. 4.0 Population Analysis The GTA population estimates and projections for 2000, 2004 and 2008 appear on the following page. The population figures have been defined for the city of Toronto and at the county level for Halton, Peel, York and Durham. The data are organized by gender in five-year age cohorts. It is known that the incidence of stroke is high in the elderly population, therefore separation into five-year cohorts was done to facilitate examination of strokes in the elderly. The GTA population estimates for 2008 reveal: A total population of 5.8 million, a 14% increase in the population since 2000; Significant increases in the percentage of the population 80 years and over, and; Females forming a higher proportion of the population in the upper age groups. M.S. Monahan & Associates Inc., and 3

17 GTA Population Estimates / Projections F , , , % -1.6% F , , , % -0.5% F , , , % 16.8% F , , , % 21.7% F , , , % 11.7% F , , , % -5.2% F , , , % -10.4% F , , , % -3.0% F , , , % 15.7% F , , , % 29.6% F , , , % 25.3% F , , , % 47.9% F , , , % 50.9% F , , , % 25.4% F ,267 87,732 92, % 11.4% F ,714 74,269 78, % 10.4% F ,988 56,591 61, % 47.2% F ,683 29,527 39, % 46.5% F90+ 14,537 20,857 25, % 74.0% M , , , % -1.7% M , , , % -2.1% M , , , % 17.6% M , , , % 24.3% M , , , % 12.9% M , , , % -4.2% M , , , % -9.7% M , , , % -6.4% M , , , % 18.0% M , , , % 36.7% M , , , % 43.2% M , , , % 47.1% M ,058 92, , % 24.6% M ,619 76,020 81, % 18.5% M ,910 55,371 62, % 24.5% M ,664 34,864 39, % 54.9% M ,464 14,275 19, % 46.5% M90+ 4,900 6,344 7, % 53.9% TOTAL 5,163,952 5,535,872 5,884, % 14.0% F0-44 1,698,130 1,745,121 1,768, % 4.2% F , , , % 35.9% F , , , % 25.3% Females 2,620,439 2,810,899 2,987, % 14.0% M0-44 1,732,920 1,785,693 1,811, % 4.5% M , , , % 36.7% M , , , % 27.8% Males 2,543,513 2,724,973 2,897, % 13.9% TOTAL 5,163,952 5,535,872 5,884, % 14.0% Revised Population Estimates / Projections - 16 October 2001 Source: MOHLTC population estimates and projections, based on Statistics Canada 1996 census data M.S. Monahan & Associates Inc., and 4

18 5.0 Incidence of Stroke The incidence of stroke in the GTA has been based on inpatient separations, reported by Ontario hospitals to the Canadian Institute for Health Information (CIHI), for fiscal year The population included those separations with a residence code in the GTA. This approach does not include those treated for stroke at home, in the physician s office or the emergency department with subsequent discharge. The identification of stroke was based on the International Classification of Disease, ICD-9 code numbers through inclusive. Cases of stroke included abstracts with the following diagnosis types: Most responsible diagnosis; Pre-existing Co-morbidity; Post Admit Co-morbidity; and Other/Secondary diagnosis. The incidence of stroke, per 10,000 population, for each of the 5 areas within the GTA is shown on page 7. This is based on admission to acute care for stroke. Incidence has been determined by gender within 5-year age cohorts. The overall trend, in incidence of stroke, is depicted in the following graph. Incidence of Stroke Admission: Acute In-Patients (per 10,000 population) 450 F M M.S. Monahan & Associates Inc., and 5

19 The stroke incidence data reveal: A progressive increase in the incidence of stroke, for both men and women, after 65 years of age; A higher incidence of stroke in the male population; A high proportion of females in the stroke population, when incidence data are applied to the population data; and An increase of 33.2% in the number of strokes, in the GTA, between 2000 and Projected Cases for 2004 and 2008 Halton Toronto Durham Peel York GTA Cases Actual Projected Cases Gender, 19 Age Groups Gender, 3 Age Groups Gender Only ,016 1, , ,032 16% 37% 13% 32% 8% 18% 5,930 6,700 7,381 6,445 6,912 6,159 6,363 13% 24% 9% 17% 4% 7% 988 1,147 1,336 1,122 1,300 1,070 1,154 16% 35% 14% 32% 8% 17% 1,404 1,770 2,156 1,746 2,115 1,579 1,714 26% 54% 24% 51% 12% 22% 1,122 1,366 1,677 1,340 1,612 1,237 1,369 22% 49% 19% 44% 10% 22% 10,320 12,009 13,760 11,675 13,142 11,063 11,761 16% 33% 13% 27% 7% 14% The use of 5-year age cohorts (19 age groups) produces higher projected volumes for stroke than has been recorded in other analyses. The Task Group reviewed the data in terms of the significant increase in incidence and considered the potential for reduced incidence of stroke as a result of education and preventive measures. It was the view of the Task Group that the incidence figures should not be adjusted downward to reflect the influence of education and stroke prevention activities. Public and professional education initiatives as well as programs for secondary prevention of stroke were felt, by the Task Group, to be in the early stages of implementation. Over time, education and programs for secondary prevention of stroke will impact the incidence of stroke however the magnitude of the change should be reviewed and monitored. M.S. Monahan & Associates Inc., and 6

20 Incidence of Stroke Admission: Utilization Rates for Acute Care in the GTA (Cases per 10,000 Population) Rates Halton Toronto Durham Peel York GTA F F F F F F F F F F F F F F F F F F F M M M M M M M M M M M M M M M M M M M TOTAL F F F Females M M M Males TOTAL M.S. Monahan & Associates Inc., and 7

21 5.1 Stroke Categorization Scheme The stakeholder consultation group and review of the literature identified the importance of assessing rehabilitation potential and planning for rehabilitation according to the severity of the stroke. The primary source of data for this project, acute care hospital discharge data reported by Ontario hospitals to the Canadian Institute for Health Information (CIHI) can be used to identify stroke patients by the presence on the records of the International Classification of Disease (ICD) diagnosis codes for strokes. However, the ICD diagnosis coding system does not differentiate between levels of severity of stroke. In order to fully use the CIHI stroke patient data it was necessary to develop an approach to categorizing the CIHI records according to complexity or burden of illness carried by the patients. CIHI has developed an approach to assigning a complexity level to acute care patients, which is dependent on the additional diagnoses (in addition to the Most Responsible Diagnosis) recorded for each patient. The CIHI complexity categories are: 1 No Complexity 2 Complexity Due to Chronic Condition 3 Complexity Due to Serious Illness 4 Complexity Due to Life Threatening Illness 9 No Complexity Assigned (e.g. Obstetrics, Mental Health) A combination of the Case Mix Group (CMG), the Major Clinical Category (MCC), the CIHI assigned complexity level, and the diagnosis type (most responsible diagnosis, pre-existing comorbid disease, post-admit comorbid disease, and other) were used by the consultants to categorize each acute care stroke patient as either Low, Medium, or High. The assignment of combinations of data elements to a category was based on examination of length of stay patterns, in-hospital mortality rates, and discharge disposition patterns. The proposed categorization of acute care stroke patients is shown in the table on the following page. M.S. Monahan & Associates Inc., and 8

22 Proposed Algorithm for Categorization of Acute Care Stroke Patients MCC CMG, Stroke Diagnosis Type CIHI Complexity Level Diseases & Disorders of Nervous System All Other Major Clinical Categories CMG 13, Stroke Medium Medium High High NA CMG 14, TIA Low Low Medium Medium NA Stroke MRDx, with Surgery Low Medium Medium High NA Other Neurosciences Low Low Medium Medium NA Stroke as MRDx Low Medium Medium High Low Stroke as Pre-Existing Comorbidity Low Medium High High Low Stroke as Post-Admit Comorbidity Medium Medium High High Medium Other Stroke Dx Low Low Medium High Low Applying this categorization algorithm to the 10,320 individuals with a stroke diagnosis, discharged from a Toronto/GTA hospital in fiscal year 2000/2001, produced the following distribution of stroke patients by category: Low 2,205 cases 21.4% Medium 5,019 cases 48.6% High cases 30.0% The table on the following page shows the distribution of the 10,320 patients by individual assignment category. The in-hospital mortality rates for the acute care strokes, by category, show that on average, the categorization does discriminate between stroke patients by risk of death. The percent in-hospital mortality for each category was: Low 2.9% Medium 14.8% High 36.1% M.S. Monahan & Associates Inc., and 9

23 Distribution of Toronto and GTA 2000/01 Acute Care Stroke Patients by Category Major Clinical Category Diseases & Disorder of Nervous System All Other Major Clinical Categories Case Mix Group, Stroke Diagnosis Type Low Medium High Total CMG 13 Specific Cerebrovascular Disorders (excluding TIA) (Stroke) 4,024 1,516 5,540 CMG 14 TIA & Precerebral Occlusions ,076 Stroke Most Responsible Diagnosis, with Surgery ,235 Other Neurosciences Stroke as Most Responsible Diagnosis 4 4 Stroke as Pre-Existing Comorbidity ,469 Stroke as Post-Admit Comorbidity Other Stroke Diagnosis TOTAL 2,205 5,019 3,096 10,320 The proposed categorization approach also produces distinct stroke groups by length of stay (average acute care length of stay for Low of 9.2 days, Medium of 14.3 days, and High of 32.9 days) and by average days spent as ALC, or awaiting placement (1.9 days for Low, 4.3 days for Medium, and 9.5 days for High). While the proposed categorization approach is not a direct measure of stroke severity we believe that it can be used with CIHI acute care data to establish categories of strokes that can be considered to be valid surrogate measures of stroke severity, and therefore rehabilitation needs and potential. 6.0 Planning Assumptions While developing the workplan for this project the Task Group discussed the role of the private sector in the provision of stroke rehabilitation in the GTA. It is recognized that the private sector plays a role in the provision of stroke rehabilitation. However, data sources are often difficult to access as well as to assess. It was decided that as part of the focus group discussions, participants would be asked to provide some indication of the types of private resources used by stroke survivors and their families. Assumption #1: For the purposes of this project the Task Group determined that the role of the public sector would be the major focus for review and analysis. M.S. Monahan & Associates Inc., and 10

24 The Task Group also reviewed the mandate for this project and recognized that stroke rehabilitation was the focus but felt that the continuum, of stroke care, needed to be considered as opposed to stroke rehabilitation in isolation. Assumption #2 The continuum of stroke care was used as a basis for considering the development of a plan for stroke rehabilitation in the GTA. It was also recognized that stroke rehabilitation extends beyond the therapeutic and treatment components of the continuum to include those areas which assist with community reintegration and supports which assist the stroke survivor and care giver(s) to resume the full activities of their lives. Assumption #3 The therapeutic and treatment components of the continuum of care would form the major focus of this project, recognizing that community reintegration and life participation are a logical extension of a rehabilitation model. The Task Group determined that the pediatric stroke population was highly specialized. Assumption #4 The adult population would be the focus for the development of a plan for stroke rehabilitation in the GTA. Recognizing that additional Regional Stroke Centers may be identified for the GTA and that the MOHLTC has not yet defined the boundaries for these Centres: Assumption #5 The planning boundary used for development of stroke rehabilitation plans has been the GTA. The GTA currently has three Regional Stroke Centres and more may be added in the future. In terms of the development of a system for stroke rehabilitation it was recognized that the Regional Stroke Centres needed to work collaboratively. The Regional Stroke Centres have identified the GTA Rehabilitation Network, as the facilitating body, to provide the forum for planning common system elements that impact stroke rehabilitation across the GTA. Assumption #6 Regional Stroke Centres are accountable for the development of stroke rehabilitation services and they will work with the GTA Rehabilitation Network, as the facilitating body, for those system elements, which impact stroke rehabilitation across the GTA. M.S. Monahan & Associates Inc., and 11

25 7.0 Vision for Stroke Rehabilitation The vision for Stroke Rehabilitation in the GTA has been based on review of the background documentation and significantly influenced by: Stroke Rehabilitation Consensus Panel Report; Current Status of Rehabilitation in the GTA 3 ; Focus Groups Sessions conducted in the fall 2001; and Data analysis of the discharge disposition from acute care. 7.1 Focus Group Discussions Participants for the focus group discussions were drawn from the member Hospitals of the GTA Rehabilitation Network, Community Care Access Centres in Toronto, Peel Halton, York Simcoe and Durham; DHC Rehabilitation Committee representation from Peel Halton, York Simcoe and Durham and representation from the Toronto DHC Stroke Strategy Work Group. Twelve sessions, in total, were held between September 11 and October 11, Preparatory materials were made available to the participants prior to attending the focus group. A total of 109 participants provided feedback to a series of specific questions about strokes, stroke care and the components of the system providing this care. Appendix C identifies the organizational representation of the focus group participants. A summary of the focus group discussions, Appendix D, was made available to the participants for review and comment. Summary themes from the focus group discussions included: Stroke care is specialized and should be organized as such throughout the continuum; Stroke care should be provided by a interdisciplinary team with specialized expertise; Measures (FIM+) need to be used as a common language and move with the patient; Common triage tools and protocols need to be defined and agreed upon; Those with moderate stroke severity are most likely to access stroke rehabilitation programs; Those with severe strokes experience the greatest difficulty with access to rehabilitation; Many severe stroke patients are referred to a nursing home without a trial of rehabilitation; 3 GTA Rehab Network. Current Status of Rehabilitation in the GTA, Clinical Committees Survey Report, June M.S. Monahan & Associates Inc., and 12

26 Centers identify need for assistance with the most complex stroke patients; The size of the population requiring lower intensity, longer duration rehabilitation is large and patients are cared for in a variety of different bed types ; Constraints in the availability of ambulatory stroke rehabilitation programs and services results in no service for many, and extended inpatient service for others. Opportunities to test the combination of ambulatory and home-based service warrant further study as a viable component of the stroke care continuum; Access to transportation and difficulties associated with transportation are major barriers for many stroke survivors. Reintegration is an essential part of the continuum of stroke care and requires greater formalization and infrastructure. Re-entry into the system requires formalization within the continuum and access to specialized stroke care expertise. 7.2 Vision for Stroke Rehabilitation in the GTA The vision for Stroke Rehabilitation in the GTA is based on the following principles: PATIENTS will move freely across the GTA in order to have timely access to the appropriate intensity and duration of rehabilitation service. SERVICES in the GTA will become differentiated to meet distinctly different levels of stroke rehabilitation so as to provide care in a comprehensive and coordinated manner. PROVIDERS of stroke care in the GTA, acute and rehabilitation, will work together to ensure that practitioners are expert in stroke rehabilitation and demonstrate best practice principles. INFORMATION to define the needs for stroke rehabilitation will be available on a timely and accurate basis. This will include patient data as well as service and capacity data. SYSTEM components and processes will become transparent. TECHNOLOGY to support the continuum of needs for stroke care will be advanced. RESEARCH and EDUCATION will inform and advance the provision of stroke care. HEALTH CARE RESOURCES will be required in sufficient quality and quantity to support the system. M.S. Monahan & Associates Inc., and 13

27 8.0 Current Situation for Stroke Rehabilitation in the GTA In addition to the qualitative data gathered from the Task Group, the focus groups and review of the background documentation, quantitative stroke data for residents of the GTA were also examined. Data sources included: Acute care and rehabilitation abstracts, as prepared by CIHI; Chronic care abstracts with evidence of rehabilitation service; Emergency visit data as prepared by CIHI; Home Care data as prepared by the MOHLTC: and Inventory data for rehabilitation beds as prepared by the GTA Rehabilitation Network. The acute and rehabilitation data proved to provide the most robust data to understand patient disposition following acute care for stroke. These data were presented in the discussion of incidence of stroke (section 5.0). There were 10,320 acute care admissions for stroke in the GTA in Of this total, 8,355 were stroke survivors. 8.1 Discharge Disposition of Stroke Patients from Emergency Emergency visit data are relatively new, in terms of consistent abstracting processes across Ontario. As such, the system has had limited review. CIHI provided a six-month period of data to examine the number of stroke patients presenting in Emergency and to track their disposition. The following table illustrates the total number of the GTA residents who presented in Emergency and categorizes their disposition as: Admitted to hospital; Death; or Discharged from Emergency. Emergency Room Contacts Six Months' Data (1 Oct March 2001) Admitted to Returned Died Hospital Home Total Six Months 2, ,413 4,227 Estimated Annual 5, ,826 8,454 % ot Total 66% 1% 33% 100% This is a new data set from the National Ambulatory Care Reporting System (NACRS), implemented in Cases were selected in the same manner as the inpatient acute data, namely a diagnosis-indicating stroke (ICD-9 codes through ) The last six months of have been used to project annual volumes, due to data inconsistencies in the early part of the year. M.S. Monahan & Associates Inc., and 14

28 Application of the NACRS data suggests that a total of 8,454 visits to Emergency were as a result of stroke. The data indicate that approximately 66% of these encounters resulted in hospitalization. Detailed data for this data set appears in Appendix E The number of GTA residents treated for stroke, in Emergency, and subsequently released is estimated at 2,826 per year. This is a large population and one that is defined as being at risk for stroke at a later date. Many of these survivors are candidates for stroke secondary prevention clinics. Others require ongoing monitoring of their neurological status and risk factors for stroke. The Task Group recommends that: RECOMMENDATION (1) Strategies be developed to understand and address the needs of the population that seek Emergency care for stroke and are not admitted to hospital. 8.2 Discharge Disposition of Acute Care Stroke Patients Acute care hospitals are required to document the discharge of patients to a health facility for further treatment, including referral to Home Care. If there is no discharge disposition recorded, the patient is presumed discharged home without home care. CIHI tracks discharge based on formal designation of the bed. Thus, rehabilitation service will not be tracked if it is provided in a complex continuing care bed but is tracked if the patient received care in a designated rehabilitation bed within complex continuing care. Data from chronic care included those patients who had an indication of stroke and were receiving rehabilitation service of physiotherapy, occupational therapy, speech etc. The distribution of acute stroke patients, by severity categorization and discharge disposition appears in the following table. Distribution of Acute Stroke Patients, by Severity, by Discharge Disposition Discharge Disposition Case Volumes Percent Distribution (All Cases) Low Medium High Total Low Medium High Low Medium High Not Xfrd 1,582 1, , % 39.0% 19.0% 74.0% 46.0% 30.0% Acute % 1.4% 2.1% 1.9% 1.7% 3.4% Rehab , % 18.0% 15.1% 4.9% 21.2% 23.9% Chronic % 5.4% 7.3% 2.2% 6.3% 11.5% NH / HFA % 9.6% 10.8% 7.2% 11.3% 17.1% Home Care % 10.2% 7.6% 8.7% 12.1% 12.0% Other Type % 1.2% 1.4% 1.1% 1.4% 2.1% Died ,138 1, % 15.2% 36.8% Percent Distribution (Deaths Excluded) Deaths Excluded Total 2,205 5,019 3,096 10, % 100.0% 100.0% 103.1% 117.9% 158.1% Home (Incl.H.C.) 1,768 2, , % 49.3% 26.6% 82.7% 58.1% 42.0% M.S. Monahan & Associates Inc., and 15

29 Overall patient disposition, for stroke survivors in the GTA, following acute care in was: 49.4% discharged home without home care; 17.7% transferred to inpatient rehabilitation; 11.6% transferred to a Nursing Home (NH) or Home for the Aged (HFA) 11.2% transferred to Home Care; and 2.1% transferred to another acute care facility. It is interesting to note that a total of 10,320 acute records included stroke as a major factor related to hospitalization yet the Emergency data estimated 5,568 admissions for stroke. This discrepancy may indicate that a number of patients are admitted directly to the Hospital or it may indicate that diagnosis of stroke is confirmed during the inpatient stay. It may also provide an indication that the early signs of stroke are not readily recognized. Examination of disposition from acute care, by region within the GTA, reveals the following: Discharge Disposition of Stroke Patients by Patient Residence Lower % of surviving stroke patients in Toronto acute care transferred to rehab, higher % to LTC Patient Residence Not Xfrd Acute Rehab Chronic NH / HFA Home Care Other Type Died TOTAL Halton Toronto Durham Peel York Total Halton 47.1% 4.3% 24.3% 4.6% 7.0% 12.5% 0.4% NA 100.0% Toronto 51.4% 1.4% 14.7% 6.3% 15.9% 8.2% 2.1% NA 100.0% Durham 46.0% 4.0% 21.7% 9.1% 3.9% 14.9% 0.5% NA 100.0% Peel 49.4% 1.9% 21.1% 4.7% 5.0% 17.3% 0.5% NA 100.0% York 43.7% 2.6% 20.0% 9.0% 8.6% 14.6% 1.5% NA 100.0% Total 49.4% 2.1% 17.7% 6.5% 11.6% 11.2% 1.5% NA 100.0% These data reveal significant differences in the discharge disposition for Toronto residents as compared to those from Halton, Durham, Peel and York. M.S. Monahan & Associates Inc., and 16