Needs Assessment and Plan for Integrated Stroke ... · Needs Assessment and Plan for Integrated Stroke Rehabilitation in the GTA February, 2002 _____ M.S. Monahan & Associates Inc.,

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

M.S. Monahan & Associates Inc., and Hay Health Care Consulting Group

Funding for this project has been provided by the Ministry of Health and Long-Term Care as part of the Ontario Integrated Stroke Strategy 2000. 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) 597-3057 Facsimile: (416) 591-6812

Email: [email protected] Web Site: www.gtarehabnetwork.ca



Table of Contents

Page Executive Summary i 1.0 Introduction 1

1.1 Background 1

1.2 Objectives 2 2.0 Approach 2 3.0 Communications Planning 2 4.0 Population Analysis 3 5.0 Incidence of Stroke 5

5.1 Stroke Categorization Scheme 8 6.0 Planning Assumptions 10 7.0 Vision for Stroke Rehabilitation 12

7.1 Focus Group Discussions 12

7.2 Vision for Stroke Rehabilitation in the GTA 13 8.0 Current Situation for Stroke Rehabilitation in the GTA 14

8.1 Discharge Disposition of Stroke Patients from Emergency 14

8.2 Discharge Disposition of Acute Care Stroke Patients 15

8.3 Stroke Survivors Receiving Home Care Service 17

8.4 Inventory of Rehabilitation Beds in the GTA 18 9.0 Plan for Integrated Stroke Rehabiltation in the GTA 19

9.1 A Systems Approach 19

9.2 Process Elements of the Stroke Rehabilitation System 20

9.2.1 Best Practice Standards 21

9.2.2 Common Assessment Tools 21

9.2.3 Common Triage Tools and Processes 22

9.2.4 Common Data Support Elements 23

(continued)



9.3 Components of the Stroke Rehabilitation System 23

9.3.1 Inpatient Stroke Rehabilitation Components 23

9.3.2 Ambulatory Stroke Rehabilitation Components 25 10.0 Issues Unique to Stroke Rehabilitation in the GTA 26

11.0 Linkages Across and Beyond the GTA 27 12.0 Implementation Considerations 28 13.0 Summary 29 Appendices Membership of the GTA Stroke Strategy Rehabilitation Task Group Appendix A

Summary of GTA Regional Stroke Centres, Stroke Rehabilitation Pilot Project Submissions Appendix B

Organizations Represented in Focus Group Discussions Appendix C

Summary of the Focus Group Discussions Appendix D

Detailed Data, Emergency Room Contacts Appendix E

Detailed Data, Survivors Receiving Home Care Service Appendix F

Centres in the GTA offering ambulatory, interdisciplinary Stroke Rehabilitation Appendix G

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

M.S. Monahan & Associates Inc., and i Hay Health Care Consulting Group

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 Hay Health Care Consulting Group, 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 2000-01. 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 ii Hay Health Care Consulting Group

• 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

2008. 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 2000-01, 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%


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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 2000-01 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 iv Hay Health Care Consulting Group

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: 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.

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.

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.

Assumption #4 The adult population would be the focus for the

development of a plan for stroke rehabilitation in the GTA.

Assumption #5 The planning boundary used for development of stroke rehabilitation plans has been 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.


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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 Report1; • Current Status of Rehabilitation in the GTA2; • 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 qua lity 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 2000. 2 GTA Rehab Network. Current Status of Rehabilitation in the GTA, Clinical Committees’ Survey Report, June 2001.


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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.


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(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 intensity-longer 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.


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(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.


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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.

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

M.S. Monahan & Associates Inc., and 1 Hay Health Care Consulting Group

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 2000. 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 Hay Health Care Consulting Group, 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 2000. 2 Heart and Stroke Foundation of Ontario. Stroke Rehabilitation Consensus Panel Report, May 2000.



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 Final Report

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.



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 2001. 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.



2000 2004 2008 2000-2004 2004-2008

F00-04 157,645 157,256 155,184 -0.2% -1.6%

F05-09 170,698 173,811 169,840 1.8% -0.5%

F10-14 160,473 180,493 187,439 12.5% 16.8%

F15-19 156,412 170,307 190,305 8.9% 21.7%

F20-24 164,448 170,621 183,699 3.8% 11.7%

F25-29 196,103 181,500 185,856 -7.4% -5.2%

F30-34 226,225 216,466 202,716 -4.3% -10.4%

F35-39 244,538 242,797 237,300 -0.7% -3.0%

F40-44 221,588 251,870 256,313 13.7% 15.7%

F45-49 192,826 220,069 249,929 14.1% 29.6%

F50-54 171,523 189,181 214,887 10.3% 25.3%

F55-59 125,137 164,840 185,140 31.7% 47.9%

F60-64 103,735 121,950 156,518 17.6% 50.9%

F65-69 91,899 100,762 115,219 9.6% 25.4%

F70-74 83,267 87,732 92,732 5.4% 11.4%

F75-79 70,714 74,269 78,054 5.0% 10.4%

F80-84 41,988 56,591 61,801 34.8% 47.2%

F85-89 26,683 29,527 39,091 10.7% 46.5%

F90+ 14,537 20,857 25,299 43.5% 74.0%

M00-04 165,960 165,317 163,169 -0.4% -1.7%

M05-09 181,883 183,064 178,032 0.6% -2.1%

M10-14 170,421 193,719 200,438 13.7% 17.6%

M15-19 165,155 182,420 205,253 10.5% 24.3%

M20-24 168,652 174,561 190,364 3.5% 12.9%

M25-29 193,354 181,314 185,303 -6.2% -4.2%

M30-34 224,110 212,876 202,288 -5.0% -9.7%

M35-39 247,239 239,834 231,537 -3.0% -6.4%

M40-44 216,146 252,588 255,074 16.9% 18.0%

M45-49 183,280 214,247 250,464 16.9% 36.7%

M55-59 119,691 154,190 171,422 28.8% 43.2%

M60-64 97,505 113,778 143,396 16.7% 47.1%

M65-69 84,058 92,197 104,698 9.7% 24.6%

M70-74 68,619 76,020 81,334 10.8% 18.5%

M75-79 49,910 55,371 62,154 10.9% 24.5%

M80-84 25,664 34,864 39,753 35.8% 54.9%

M85-89 13,464 14,275 19,723 6.0% 46.5%

M90+ 4,900 6,344 7,541 29.5% 53.9%

TOTAL 5,163,952 5,535,872 5,884,917 7.2% 14.0%

F0-44 1,698,130 1,745,121 1,768,652 2.8% 4.2%

F45-64 593,221 696,040 806,474 17.3% 35.9%

F65+ 329,088 369,738 412,196 12.4% 25.3%Females 2,620,439 2,810,899 2,987,322 7.3% 14.0%

M0-44 1,732,920 1,785,693 1,811,458 3.0% 4.5%

M45-64 563,978 660,209 770,934 17.1% 36.7%

M65+ 246,615 279,071 315,203 13.2% 27.8%

Males 2,543,513 2,724,973 2,897,595 7.1% 13.9%

TOTAL 5,163,952 5,535,872 5,884,917 7.2% 14.0%

GTA Population Estimates / Projections

Source: MOHLTC population estimates and projections, based on Statistics Canada 1996 census data

Revised Population Estimates / Projections - 16 October 2001



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 2000-01. 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 430.0 through 436.0 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)

0

50

100

150

200

250

300

350

400

450

00-04 05-09 10-14 15-19 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85-89 90+

F M



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

2008.

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.

Projected Cases for 2004 and 2008CasesActual

2000 2004 2008 2004 2008 2004 2008876 1,016 1,201 994 1,154 948 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 11,76116% 33% 13% 27% 7% 14%

York

GTA

Halton

Toronto

Durham

Peel

Projected Cases

Gender, 19 Age Groups Gender, 3 Age Groups Gender Only



Rates Halton Toronto Durham Peel York GTAF00-04 0.93 0.53 1.20 0.58 0.99 0.70F05-09 0.00 0.13 0.00 0.27 0.00 0.12F10-14 0.00 0.44 0.51 0.29 0.77 0.44F15-19 0.00 0.89 0.56 0.30 0.78 0.64F20-24 2.67 1.02 0.00 0.86 0.00 0.85F25-29 1.81 1.38 1.34 1.29 0.44 1.27F30-34 2.27 1.23 2.61 1.10 1.48 1.41F35-39 3.96 2.32 1.53 2.23 2.28 2.33F40-44 4.12 3.79 1.67 2.32 2.02 3.02F45-49 4.74 6.19 7.67 5.35 5.21 5.91F50-54 8.95 11.47 12.42 8.50 6.86 10.09F55-59 11.61 15.70 19.15 15.92 12.95 15.34F60-64 25.22 33.14 30.39 27.54 17.61 29.40F65-69 57.01 46.66 57.95 44.47 40.20 47.33F70-74 115.60 78.60 122.86 95.19 74.16 87.07F75-79 165.25 133.31 138.46 155.72 139.08 139.72F80-84 208.92 203.19 277.46 202.30 239.13 213.39F85-89 364.09 264.71 284.01 215.78 343.16 274.71F90+ 411.33 306.61 264.19 309.97 325.85 313.68M00-04 0.00 2.38 1.17 1.94 1.39 1.87M05-09 0.00 0.37 0.93 0.00 0.00 0.27M10-14 0.00 0.69 0.98 0.00 0.73 0.53M15-19 0.79 0.28 0.00 0.56 1.10 0.48M20-24 0.88 1.00 0.00 0.00 0.40 0.59M25-29 0.82 0.57 2.02 0.00 0.83 0.62M30-34 0.00 1.06 2.73 0.68 1.15 1.07M35-39 0.59 2.50 3.04 2.55 1.81 2.35M40-44 1.21 4.07 3.37 3.02 4.37 3.61M45-49 8.45 8.47 6.06 7.19 6.14 7.58M50-54 11.52 18.38 13.50 11.03 10.73 14.62M55-59 26.33 29.89 23.26 30.26 19.07 27.40M60-64 45.10 51.93 44.14 44.82 38.68 47.48M65-69 96.70 72.48 86.29 64.60 58.14 72.45M70-74 105.81 119.30 149.92 117.76 115.19 120.08M75-79 192.70 174.66 209.69 150.89 178.64 176.52M80-84 259.15 276.56 293.04 289.95 261.80 276.65M85-89 532.36 305.69 343.84 348.45 320.43 331.25M90+ 411.76 421.61 530.30 374.75 374.79 416.33TOTAL 23.32 23.32 19.29 13.93 15.48 19.98F0-44 1.95 1.45 1.09 1.11 1.08 1.32F45-64 10.98 14.93 15.00 11.98 9.08 13.22F65+ 154.49 125.38 143.82 121.09 125.42 128.63Females 24.58 23.11 19.55 13.86 15.32 20.00M0-44 0.50 1.53 1.69 1.06 1.40 1.36M45-64 19.67 23.94 17.58 19.43 15.32 20.73M65+ 162.69 151.06 168.99 133.14 133.91 148.98Males 22.03 23.54 19.02 13.99 15.64 19.96TOTAL 23.32 23.32 19.29 13.93 15.48 19.98

Incidence of Stroke Admission: Utilization Rates for Acute Care in the GTA (Cases per 10,000 Population)



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.



Proposed Algorithm for Categorization of Acute Care Stroke Patients

1 2 3 4 9

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

Dis

ease

s &

D

isor

ders

of

Ner

vous

Sys

tem

All

Oth

er M

ajor

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linic

al

Cat

egor

ies

MCCCIHI Complexity Level

CMG, Stroke Diagnosis Type

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%

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%



Distribution of Toronto and GTA 2000/01 Acute Care Stroke Patients by Category

Major Clinical Category 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 960 116 1,076

Stroke Most Responsible Diagnosis, with Surgery 561 269 405 1,235

Other Neurosciences 162 138 300

Stroke as Most Responsible Diagnosis 4 4

Stroke as Pre-Existing Comorbidity 454 431 584 1,469

Stroke as Post-Admit Comorbidity 24 25 579 628

Other Stroke Diagnosis 40 16 12 68

TOTAL 2,205 5,019 3,096 10,320

Dis

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s &

Dis

orde

rs

of N

ervo

us S

yste

mA

ll O

ther

Maj

or

Clin

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Cat

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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.



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.



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 GTA3; • 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, 2001. 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 2001.



• 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 infrastruc ture. • 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 princip les: 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.



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 2000-01. 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.

This is a new data set from the National Ambulatory Care Reporting System (NACRS), implemented in 2000-01. Cases were selected in the same manner as the inpatient acute data, namely a diagnosis- indicating stroke (ICD-9 codes 430.0 through 436.0.) The last six months of 2000-01 have been used to project annual volumes, due to data inconsistencies in the early part of the year.

Admitted to Hospital

DiedReturned

HomeTotal

Six Months 2,784 30 1,413 4,227Estimated Annual 5,568 60 2,826 8,454% ot Total 66% 1% 33% 100%

Emergency Room ContactsSix Months' Data (1 Oct 2000 - 31 March 2001)



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

Low Medium High Total Low Medium High Low Medium High

Not Xfrd 1,582 1,958 588 4,128 71.7% 39.0% 19.0% 74.0% 46.0% 30.0%

Acute 41 71 66 178 1.9% 1.4% 2.1% 1.9% 1.7% 3.4%

Rehab 105 903 468 1,476 4.8% 18.0% 15.1% 4.9% 21.2% 23.9%

Chronic 46 269 225 540 2.1% 5.4% 7.3% 2.2% 6.3% 11.5%

NH / HFA 155 483 334 972 7.0% 9.6% 10.8% 7.2% 11.3% 17.1%

Home Care 186 514 235 935 8.4% 10.2% 7.6% 8.7% 12.1% 12.0%

Other Type 24 60 42 126 1.1% 1.2% 1.4% 1.1% 1.4% 2.1%

Died 66 761 1,138 1,965 3.0% 15.2% 36.8%

Total 2,205 5,019 3,096 10,320 100.0% 100.0% 100.0% 103.1% 117.9% 158.1%

Home (Incl.H.C.) 1,768 2,472 823 5,063 80.2% 49.3% 26.6% 82.7% 58.1% 42.0%

Deaths Excluded

Case Volumes Percent Distribution (All Cases)Percent Distribution (Deaths

Excluded)



Overall patient disposition, for stroke survivors in the GTA, following acute care in 2000-01 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:

These data reveal significant differences in the discharge disposition for Toronto residents as compared to those from Halton, Durham, Peel and York.

Discharge Disposition of Stroke Patients by Patient Residence

Patient Residence

Not Xfrd Acute Rehab Chronic NH / HFA Home Care Other Type

Died TOTAL

Halton 351 32 181 34 52 93 3 130 876

Toronto 2438 68 695 297 752 390 99 1191 5930

Durham 365 32 172 72 31 118 4 194 988

Peel 578 22 247 55 59 202 6 235 1404

York 396 24 181 82 78 132 14 215 1122

Total 4128 178 1476 540 972 935 126 1965 10320

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%

Lower % of surviving stroke patients in Toronto acute care transferred to rehab, higher % to LTC



• 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.

The discharge of stroke survivors, from acute care to inpatient rehabilitation is lower, in Toronto, for those with medium and high stroke severity than within the GTA. This raises concern for Toronto residents and their access to inpatient stroke rehabilitation. Although the GTA has experienced a significant increase in the number of rehabilitation beds, in the past 4 years, most of the increase has been in the 905 area. Assessment for stroke rehabilitation is defined as a principle of best practice. Many referred to the NH/HFA sector have not been assessed for, or had a trial of rehabilitation and this practice should be improved.

8.3 Stroke Survivors Receiving Home Care Service A separate data set, as maintained by the MOHLTC, was used to examine care provided, in the community, for stroke survivors. The same methodology, as used to project the future incidence of stroke, was used to examine the community impact for stroke survivors for 2004 and 2008.

(actual)2000 * 2004 2008

3,544 4,286 5,179% Increase 21% 46%

Stroke Clients Admitted to Home Care(projected)

* 2000 refers to fiscal year 2000/2001

Low Medium High TotalHalton 7.0% 32.8% 26.6% 24.3%Toronto 4.7% 16.1% 21.6% 14.7%Durham 3.6% 30.1% 29.6% 21.7%Peel 4.4% 26.0% 29.2% 21.1%York 6.5% 22.4% 25.5% 20.0%Total 4.9% 21.2% 23.9% 17.7%

Stroke SeverityPatient Residence

Lower percent of stroke survivors with medium or high severity recorded as transfer to inpatient rehab in Toronto

Discharge of Surviving Stroke Acute Patients to Inpatient Rehab by Patient Residence



It is interesting to note that on discharge from acute care, only 935 patients were identified as referred to Home Care, yet the program identified 3,544 admissions for stroke. This difference may be, at least partially, accounted for by incomplete discharge summaries or coding variations. More likely, a large number of the referrals were made after discharge from acute care when survivors and caregivers were experiencing significant challenges with return to functional status and maintaining the activities of daily living. In order to facilitate stroke rehabilitation it is recommended that:

RECOMMENDATION

(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,

The combination of the aging population and the trend to provide care within the community suggests that by 2008 there will be a significant increase in the demand for community based care to support stroke survivors. Detailed data appear in Appendix F.

8.4 Inventory of Rehabilitation Beds in the GTA The GTA Rehabilitation Network has maintained an inventory of the rehabilitation beds. The initial inventory data attempted to identify those beds that were specifically designated for stroke rehabilitation. However, many centers indicated that they preferred to maintain flexibility in the use of their rehabilitation beds and therefore did not designate beds specifically for stroke rehabilitation. The table below illustrates the total number of rehabilitation beds in the GTA, by region, and compares this with the directions as set out by HSRC.

Region HSRC Apr '98 Apr '00 Nov '00 Nov '01% since Apr 98

% HSRC directions

Halton * 39 0 39 39 39 390% 100%Toronto** 889 855 843 897 941 11.3% 105%Toronto Regional Rehab Centres 590 635 611 610 613 -3.0% 103.8%Toronto Teaching/Community 299 210 232 287 328 56.2% 109.7%Durham 99 65 79 79 79 21.5% 80%Peel 212 28 78 103 143 410% 67%York 95 48 52 60 77 60.4% 81%Total 1334 986 1091 1178 1279 32.5% 95.8%* Not all Halton hospitals are in GTA ** Toronto total, then broken down

Distribution of Rehabilitation beds in GTA



There has been a significant increase in the total number of rehabilitation beds in the GTA. However, growth has occurred primarily in the regions of Halton and Peel. There has been a smaller increase in rehabilitation beds in Durham and Toronto. The GTA Rehabilitation Network collected ambulatory stroke rehabilitation data with the initial inventory. At that time 18 centres, in the GTA, reported offering ambulatory, interdisciplinary, rehabilitation service for the stroke population. Appendix G contains list of centres offering stroke rehabilitation services on an ambulatory basis. Data related to rehabilitation, offered as a single service, was not collected at that time. 9.0 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.

The Task Group reviewed the current challenges and have developed a plan which will, over time, result in a more integrated and systematically organized approach to stroke rehabilitation.

9.1 A Systems Approach for Stroke Rehabilitation in the GTA In a workshop conducted for this project, a systems approach was selected as a basis to develop a model for Stroke Rehabilitation in the GTA. A total of 11,181 stroke survivors require assessment for rehabilitation, 8355 stroke survivors who were discharged from acute care in the GTA during 2000-01 plus 2,826 survivors are estimated to have been treated for stroke in the Emergency department and discharged. Thus, 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 . This does not take into account those treated by physicians in the community. 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.

A common set of definitions was needed to consider a systems model. Currently inpatient programs are highly focused on admission criteria and length of stay targets rather than identification of patient need and the appropriate platform for care. Ambulatory programs are highly varied across the GTA and many focus on selection criteria rather than patient need or characteristics, which indicate that care can/should, be provided on an ambulatory basis. For the purpose of this document the Task Group used the inpatient programs as identified by the Stroke Rehabilitation Consensus Panel:

• Programs for high intensity-short duration rehabilitation; • Programs for highly specialized and complex rehabilitation; and • Programs for low intensity- long duration rehabilitation.

Ambulatory rehabilitation was defined as including single as well as interdisciplinary service provided in a hospital, community, or home setting or in a combination of settings, on an ambulatory basis.

9.2 Process Elements of the Stroke Rehabilitation System The Task Group considered four essential process elements for the development of a system for stroke rehabilitation in the GTA:

• Best Practice Standards; • Common Assessment Tools; • Common Triage Tools; and • Common Data Support Elements.

These elements are seen as spanning the continuum of stroke care. They impact the acute care management of strokes and are considered as vital pre-requisites to the determination of the appropriate type and platform for stroke rehabilitation. Each of the process elements was considered within small groups in a workshop setting. Participants were asked to consider the application of best practice, as well as to identify strategies to accomplish these goals within the next 2-5 years.



9.2.1 Best Practice Standards

Significant work- in-progress has been undertaken by four Regional Stroke Centres in the province with the support of HSFO. The design of the work is evidence based, and the model addresses components of care, across the continuum, and has a number of tools embedded within the structure. The Regional Stroke Centre Forum (HSFO) is viewed as the means to achieve provincial standardization for best practice standards. The Task Group recommends that: RECOMMENDATIONS

(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.

Much of this work has been started. However, there is a perceived need to build support and acceptance for this work as the logical basis for system development.

9.2.2 Common Assessment Tools There is no standardization in the use of assessment tools for stroke care management in acute care. Patient assessment data does not move with the patient at discharge from acute care. Rehabilitation settings have been mandated to implement the National Rehabilitation Reporting System (CIHI) by October 2002. The Task Group recommends that: RECOMMENDATIONS

(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).

Funding support will be required to extend the implementation of common assessment tools across the GTA.

9.2.3 Common Triage Tools and Processes Those diagnosed with a stroke, are not systematically assessed for rehabilitation potential. Assessment practices are highly varied by institution and practitioner. A number of current studies or pilot projects include triage components. The Task Group recommends that: RECOMMENDATION

(8) A Common Triage Tool be developed/refined for consistent use, across the continuum of stroke care, in the GTA.

A common triage tool should link patient characteristics with the appropriate pla tform for rehabilitation (ambulatory, home or inpatient) as well as the intensity and duration of service. The Task Group recommends that: RECOMMENDATIONS

(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.

Development/refinement of a common triage tool will build upon the current rehabilitation pilot project conducted by the University Health Network, Toronto Western Hospital. However, additional funding will be required to support the implementation of common assessment tools across the GTA.



9.2.4 Common Data Support Elements

Several databases currently contain data elements for patients with strokes (CIHI, Canadian Stroke Registry and MDS). None of these data sets examine system requirements such as waiting lists and type of rehabilitation service required. The Cancer Registry and Cardiac Care Network provide working models for database management of patient populations with specific needs. The Task Group recommends that: RECOMMENDATION

(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.

Such a system needs to be considered a priority, in terms of development, to effectively manage a system of care for over the 11,000 stroke survivors in the GTA. The data will also need to be compatible with CIHI and the Measuring and Monitoring accountability framework as articulated, by the MOHLTC, for the Ontario Stroke Strategy. This initiative is recognized as needing to be integrated with the data activity of other organizations such as:

• CIHI; • Ontario Stroke Strategy; • Stroke Registry; • Regional Stroke Centres; and • The GTA Rehabilitation Network Informatics Committee.

New funding will be required to plan, develop and implement an information system to support the needs of stroke survivors across the GTA.

9.3 Components of the Stroke Rehabilitation System

9.3.1 Inpatient Stroke Rehabilitation components At the present time stroke rehabilitation is considered as a generic program. Through referrals, stroke rehabilitation programs are asked to respond to a broad range of patient defined needs. However, the rehabilitation needs of stroke survivors are not homogenous. The patient needs are highly varied and the type of program supporting these needs is also varied. Stroke rehabilitation requires greater program differentiation as well as increased specialization, to systematically meet patient needs, in the most appropriate manner and efficient manner.



The Task Group recommends that: RECOMMENDATION

(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.

Programs for high intensity-short duration stroke rehabilitation most closely resemble the current inpatient rehabilitation programs offered in regional rehabilitation centers as well as local rehabilitation offered in acute care centers. Programs for highly specialized and complex stroke rehabilitation do not formally exist and patients with the most complex requirements are often referred to programs such as Acquired Brain Injury. Lack of programming, for this population, is perceived as a major deficiency in stroke rehabilitation. The number of patients requiring this type of program is not felt to be large, compared to the total population with stroke, however the needs are highly complex and the length of stay may be extended. Programs for low intensity-long duration stroke rehabilitation have often been referred to as “slow stream rehabilitation” but they are not formally recognized as a discrete rehabilitation program for funding purposes. Complex Continuing Care programs and centres often provide this type of program. The population, with needs for this type of program, is felt to be large and will continue to increase with the aging population. Concern exists that funding constraints for Complex Continuing Care may cause organizations to discontinue “slow stream” rehabilitation programs as they exceed funding levels. The Task Group felt that program differentiation, for stroke rehabilitation, needed to take place and would result in more effective, as well as efficient, care delivery. Sufficient evidence exists to support the need for program differentiation and program planning is felt to be an activity that could be started now. Building upon existing expertise in stroke rehabilitation, within the GTA, the Task Group recommends that: RECOMMENDATION

(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.



The Task Group further recommends that: RECOMMENDATION

(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 intensity-longer duration stroke rehabilitation. This includes target populations, service components and resource requirements.

A significant portion of the program planning can be initiated now with the expectation that pilot projects would inform the planning process as data become available. The Task Group felt that common assessment and triage tools needed to be in place before the determination of inpatient stroke rehabilitation beds could be effectively undertaken. The Task Group recommends that: RECOMMENDATION

(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.

With the evolution of stroke rehabilitation to differentiated programs with specialized service and specialized expertise the current approach to funding for stroke rehabilitation requires review. The Task Group recommends that: RECOMMENDATION

(16) The MOHLTC, with the appropriate partnerships, address the funding for stroke rehabilitation, and make adjustments to recognize differentiated levels of program.

9.3.2 Ambulatory Stroke Rehabilitation Components

At the present time there are a variety of ambulatory programs that address the needs of stroke survivors. These services are conceptualized as therapeutic services, including PT, OT and Speech etc., as well as home support and lifestyle services including socialization, wellness and community reintegration. The GTA Rehabilitation Network inventory reported 18 centres, in the GTA, which offer multi-disciplinary stroke rehabilitation services. A listing of these centres appears in Appendix G. The inventory included Day Hospital programs that may or may not be specialized in stroke rehabilitation. Provision of single services such as PT, OT and Speech were not included with the inventory report. The service volume and capacity of these programs have not been identified.



Stroke survivors can require access to one or more rehabilitation services, on an ambulatory basis. However, admission criteria often limit access to those who require a single service. Evidence in the literature, supported by the focus group findings, indicates that more stroke rehabilitation could be offered on an ambulatory basis. This would require increased attention to and resources directed to ambulatory stroke rehabilitation as well as greater awareness of ambulatory programs that support stroke rehabilitation. The Task Group recommends that: RECOMMENDATIONS:

(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.

10.0 Issues Unique to Stroke Rehabilitation in the GTA The GTA currently has three Regional Stroke Centres and additional centres may be added in the future. There are also three regional rehabilitation centres. Additional rehabilitation capacity exists within the local rehabilitation programs of community general hospitals and within three complex continuing care facilities. The stroke population in the GTA is very large and expected to increase dramatically by 2008. Better ways to manage the needs of this population need to be implemented both from a quality of life perspective as well as from a cost perspective for the health care system. Independent of boundaries that may become established for Regional Stroke Centres, the stroke rehabilitation population will need to move freely across GTA. The Task Group recognized the patient’s desire to receive care close to home as well as the need to support current relationships between hospitals. However, strong commitment between institutions was seen as essential to making a system for stroke rehabilitation work in the GTA. The Task Group recommends that:



RECOMMENDATION

(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.

With the size of the GTA and the presence of three Regional Stroke Centres, the GTA Rehabilitation Network is felt to provide the collaborative forum for system elements that impact the entire continuum. The Task Group recommends that: RECOMMENDATION

(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.

The GTA is recognized as a major multicultural centre providing care for those with many different languages, cultural traditions and beliefs. The Task Group recommends that: RECOMMENDATION

(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.

11.0 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.

It will be necessary for the Regional Stroke Centres, in partnership with providers of stroke care across the continuum, to develop an ongoing structure that will foster the development of a “system for stroke care in the GTA”. With acceptance of the content and direction of this report, it is recommended that: RECOMMENDATION

(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.

12.0 Implementation Considerations There are a large number of initiatives currently underway which support the Ontario Stroke Strategy. These initiatives offer stroke care providers an opportunity to share experiences and a common vision for the future. The GTA stroke rehabilitation pilot projects will assist with the development of an enhanced system for stroke care. An ongoing structure, within the GTA Rehabilitation Network, will maintain links with the Regional Stroke Centers and the status of pilot project activities. Familiarity with the pilot project activities should assist with fast-tracking future implementation activities throughout the GTA.

The development of Common Assessment and Common Triage Tools and Processes, for use in the GTA, is a major pre-requisite for the development of a system for stroke rehabilitation. There are projects in progress that will assist with this development however additional funds will be required to accomplish this mammoth task.

Enhanced knowledge of ambulatory stroke rehabilitation models and current capacity in the GTA, is work that can be done quickly and should be used to augment the data in this report. The information system requirements to support the stroke population and their needs for care, is a major issue for the GTA and one which needs to be addressed quickly. This includes system capacity as well as availability and waiting list data. With over 10,000 people with stroke, admitted to acute care annually in the GTA, a “system for stroke care” cannot be operationalized without major information system investment. The table on the following page 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.

13.0 Summary This project is part of a larger initiative, the Ontario Integrated Stroke Strategy. At the outset, the HSFO led a three-year demonstration project to launch the strategy. In June 2000 the MOHLTC announced the annual funding of $30 million to advance stroke care in Ontario. Six Regional Stroke Centres have been named, and three are located within the GTA. Funds were provided by the MOHLTC to conduct a needs assessment and develop a plan for stroke rehabilitation in the GTA. Population data together with incidence data for stroke indicate that there are over 11,000 stroke survivors annually in the GTA. The increasing incidence of stroke with aging suggests that the number of stroke survivors will increase 33%, by 2008. There are strategies in development to prevent strokes and to increase public awareness regarding the early signs of stroke. Professional education programs are being developed to support best practices in the diagnosis treatment and management of stroke. However,

Implementation ConsiderationsLevel Initiative 1 2 3 4 5

Provincial Develop strategies to manage post-ER stroke careComplete Best Practice StandardsDefine common assessment elementsDevelop approach for stroke data managementFormalize differentiated types of stroke rehabiltation programsAddress funding for differentiated stroke rehabilitation programsReview/approve inpatient stroke rehabilitation beds for GTA

GTA Adapt Best Practice Standards for GTAFacilitate Implementation of Common Assessment ToolFacilitate Implementation of a Common Triage ToolDefine data elements to manage patient flow & system demandsDevelop program for highly specialized, complex rehabilitationDevelop program for low intensity-long duration rehabilitationDetermine requirements for inpatient stroke rehabilitation beds Conduct detailed inventory of ambulatory stroke rehab servicesExamine models for ambulatory stroke rehabilitationDevelop templates for formalized agreements for acute & rehabDetermine requirements for culturally sensitive stroke rehabilitation

Regional Stroke Pre-discharge assessment, Home CareCentre Implement Best Practice Standards

Test model for common assessment tool in UHN-TWH pilot projectImplement Common Assessment Tool(s)Implement Common Triage ToolImplement data elements of manage patient flow/system demandsTest model for ambulatory stroke rehabilitation in West GTA Implement formalized agreements between acute & rehab centres

Year



these are relatively new initiatives and it will take time to demonstrate the effectiveness of these initiatives to impact the annual number of stroke survivors. Qualitative and quantitative data suggest that stroke care in the GTA is fragmented. The components of the care continuum are not well linked and stroke survivors, their families and the professionals, who provide care to this population, are all frustrated with efforts to enhance recovery. 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. The large size of the stroke population in the GTA suggests that program differentiation, for stroke rehabilitation, would result in more homogenous populations. Three distinct types of stroke rehabilitation are suggested for program development, including target populations, service components, outcomes and length of stay. The sizing of these programs requires implementation of common assessment and triage tools. Much of this work is currently underway and will be supported by pilot projects as part of the Ontario Integrated Stroke Strategy. The literature indicates that focus is often on inpatient stroke rehabilitation and that the merits of ambulatory rehabilitation have not been fully developed. Greater knowledge of and enhancement to the programs, for ambulatory stroke rehabilitation, are considered to be a priority in the GTA. This will not only increase the number of patients receiving stroke rehabilitation; it will also free up some of the inpatient capacity where patients could be treated on an ambulatory basis. Secondary prevention clinics and ongoing monitoring of all patients who have had a stroke is considered to be part of the continuum that is in early development. When fully implemented these components should reduce the disability currently associated with moderate and severe strokes. 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.

Appendices

Appendix A

GTA Coordinated Stroke Strategy Rehabilitation Task Group

Membership

Catherine Adam York Community Care Access Centre Shann Beck Regional Stroke Coordinator Sunnybrook & Women’s College Health Sciences Centre Kathi Colwell Health Systems Manager, Neurosciences / MSK Trillium Health Centre Wendy Gilmour Sunnybrook & Women’s College Health Sciences Centre Sonia Jacobs Toronto District Health Council Kathryn LeBlanc West GTA Stroke Network Mary Lewis Heart and Stroke Foundation of Ontario Mimi Lowi-Young St. John’s Rehabiltation Hospital GTA Rehabilitation Network (Committee Chair) Mary Ann Neary University Health Network Toronto Western Hospital Wendy Nelson Trillium Health Centre Shelley Sharp Regional Stroke Coordinator University Health Network, Toronto Western Hospital Eric Sutton Simcoe York District Health Council Rika Vander Laan GTA Rehabilitation Network Gaye Walsh The Riverdale Hospital Elizabeth Woodbury Ministry of Health and Long-Term Health Care

Health Care Programs Branch – Toronto Region

Appendix B

Needs Assessment and Plan for Integrated Stroke Rehabilitation in GTA

Rehabilitation Pilot Projects Summary of GTA Submissions

To the Ministry of Health and Long-Term Care

University Health Network, Toronto Western Hospital Submission This proposal addresses best practices to strengthen and improve coordination of stroke Rehabilitation, especially in the case management of the transition between hospitals and from hospital to community-based care. It includes four components:

• Development of a coordinated referral system to facilitate appropriate and timely access to required stroke rehabilitation services through the care continuum;

• Training and education in the use of the assessment tools and referral processes, data collection processes; and education of patients and families in the rehabilitation services and referral processes;

• Implementation of new assessment tools and referral processes; and • Tracking, monitoring and evaluation of patient movement through the care

continuum and evaluation of the coordination systems to facilitate efficient and effective patient movement across the continuum.

Sunnybrook & Women’s College Health Science Centre Submission This proposal addresses the system goal of individuals who experience a stroke having timely access to the appropriate intensity and duration or Rehabilitation services. This pilot project will develop, implement and evaluate a stroke telerehabilitation consultation model. It will have three separate components:

• Allow for Regional Networked System Infrastructure Development under NORTH Network;

• Operationalize a Provider/Team Consultation Model, for trial, by 5 Region Network Linked Pilot Sites; and

• Trial a Regional Remote Access Site – Stroke Self-Management Program Delivery via Telehealth.

Appendix B

West GTA Stroke Rehabilitation Submission The primary objective of this pilot project is to provide more effective support for stroke survivors and their caregivers as they make a seamless transition from institution to home-based rehabilitation. The approach will be supported with the development and implementation of client-centered care, planning and care coordination that uses as its foundation, assessment, tools and standard service guidelines. This work will be conducted in three phases:

• Phase I: Service Needs and Resource Utilization • Phase II: Service Model Development and Implementation • Phase III: Evaluation

Appendix C

List of Organizations represented at the GTA Stroke Rehabilitation Focus Groups

Organization Name Baycrest Centre for Geriatric Care CCAC of Peel CCAC of York Region CCAC Simcoe County ComCare Health Services Credit Valley Hospital Durham Access To Care Durham HKPR District Health Council (CE) East York Access Centre for Community Services Etobicoke CCAC Halton Healthcare Services Corporation Halton Hills Speech Centre Humber River Regional Hospital Joseph Brant Memorial Hospital Lakeridge Health Corporation Markham Stouffville Hospital Mt. Sinai Hospital North York CCAC North York General Hospital Providence Centre Rouge Valley Health System Royal Victoria Hospital Scarborough CCAC Southlake Regional Health Centre St. John's Rehabilitation Hospital St. Joseph's Health Centre St. Michael's Hospital Sunnybrook & Women's College Health Sciences Centre The Riverdale Hospital The Scarborough Hospital Toronto CCAC Toronto Rehab Trillium Health Centre University Health Network West GTA Stroke Network West Park Healthcare Centre William Osler Health Centre York Central Hospital York Community Care Access Centre

Appendix D

Monahan & Associates with Hay Health Care Consulting Group

Needs Assessment and Development of a Plan

for Integrated Stroke Rehabilitation in the GTA

Summary from Focus Groups Preamble: As one of the participants, in these focus groups, you are receiving a summary of the comments made at these sessions. Hopefully this will provide a broader picture of the type of discussions that took place across the GTA. Information has been summarized, according to the frequency of the comments. You are invited to respond to this document particularly if you feel there are key items that were missed or are misinterpreted. This document will be used by the Steering Committee, as they continue with their deliberations, and report development for this project. Your responses are requested by Nov 5th, 2001. Thank you for your participation. Focus Groups : 12 Sessions held between September 11 and October 11, 2001. Participation: Included all member Hospitals of the GTA Rehab Network, Community Care Access Centres in Toronto, Peel Halton, York Simcoe and Durham; and DHC representation included Peel-Halton, York-Simcoe and Durham. A total of 109 participants provided feedback to a series of specific question about strokes, stroke care and the components of the system providing this care. The context for the focus group discussion was set with the following background:

• Coordinated Stroke Strategy, Timeline and Critical Events; • Components of the Stroke Continuum; • Regional Stroke Centres and Regional Acute Stroke Care; and • Recognized that Stroke Rehabilitation was significantly influenced by other

components of the continuum particularly acute care stroke management. Each of the questions, for discussion within the focus group, appears below along with a summary of comments by the participants. Discussion Question #1 - Stroke Severity

What differentiates a Moderate from a Severe Stroke? Can a common measurement/tool be used to make the differentiation on a consistent basis? Are there critical points in time for the assessment?

Participants found it difficult to be precise in the distinction between levels of severity. General agreement that the degree of deficit, impairment or disability determines stroke severity: - degree of hemiparesis

- functional status, physical disability

Appendix D


- perceptive deficits - cognitive deficits or impairment - communication impairment - location in the brain, test results (CT scan etc) - tolerance level

FIM widely used in Rehab settings, on admission and discharge, and less so in acute care. Wide range of comments about FIM (Not all aware of FIM as current ly supported by CIHI) Concerns expressed about time and cost to collect, training and reliability, timing of measurement in acute care. FIM data not used as a common language, data elements do not move with the patient. Strong support for use of a standardized triage tool with common data elements, used consistently across the continuum. (FIM+ measures related to comorbid conditions, cognition, communication and home support.) Mild Stroke, strong support for care on an ambulatory basis. Barriers exist in terms of lengthy waiting lists and limited resources. Access to a single service, is a barrier in some ambulatory programs. Moderate and Severe strokes are admitted to acute care. The acute care portion of their stay is relatively short. Most stroke patients are cared for on general medical units. However, there was support for dedicated stroke units with dedicated stroke expertise. General agreement that Moderate Strokes are able to access a wide range of rehabilitation services. Severe strokes, experience greater limitations in their access to rehab resources. Barriers include ALOS “targets for rehab” and “likely to benefit” criteria. Many move from acute to ALC or transition beds and then to Nursing Home settings without benefit of a trial of rehab. There is a population who goes to rehab service offered in a Complex Continuing Care setting. The number is felt to be small in relation to the size of the severe stroke population. There was general support for stroke care being provided where there is sufficient critical mass to have stroke units and staffed with specialized stroke care expertise. Discussion Question #2 Regional Stroke Rehab What stroke patient populations SHOULD be referred to a

Regional Rehab Centre for their care?

Responses influenced by current experience as a service provider within the region:

• Centres outside GTA have limited experience with a Regional Rehab Center. - See that they need access to highly specialized services

such as ABI.

Appendix D


• Centres within GTA have experience with Regional Rehab Centres

- Most felt that the complex patients or those with the most severe deficits should be cared for in a Regional Rehab Centre.

- Those with behavioral/cognitive issues; - Those with complex speech and language needs; - Those with co-morbid conditions; - Unusual strokes, young populations with severe deficits. - Some felt that Regional Rehab Centers should handle

moderate-severe strokes including those with co-morbid conditions, speech and mobility issues.

- Those who need access to Neuro Psychology and vocational rehab services.

Concerns raised that funding levels for Regional Rehab Centers are not distinctly different from those of local rehab programs recently funded.

Discussion Question #3 – Local Stroke Rehab

What stroke patient populations SHOULD be referred to a Local Rehab program for their care? How would the Local Rehab program be differentiated from that offered by the Regional Rehab Program?

Most participants felt that the stroke population, with moderate severity, is largely the group receiving local rehab service. Barrier: HSRC targets for short-term rehab identified as 14 days (Actual experience is closer to 21-28 days). The patient’s ability to respond within a limited time period influences the selection process for admissions. Current criteria limit those with cognitive impairment or those who will take an extended period to reach their goals. There is strong support for the population that should be in a local rehab program as those who will benefit from an interdisciplinary rehabilitation approach offered within a limited time period. There was support for specialized Stroke rehab programs, staffed with specialized expertise, rather than general rehab programs staffed with generalists. Discussion Question #4 – Care provided in non-designated beds

Is the profile of the stroke patient who is referred to non designated rehab bed different than those who are currently referred to programs in designated rehab beds? What is the nature of their stroke rehab needs?

Focus group participants could identify patient populations more readily than bed designations.

Appendix D


Participants strongly agreed that the severe stroke population has limited access to rehab services. Many wait is acute care, without access to rehab services. Large numbers are referred to the Nursing Home sector in order to move patients from the acute care sector. There was strong support that the severe stroke population is large in number, often elderly with co-morbid conditions. Participants felt that a large number of stroke patients are currently cared for in non-designated beds and in complex continuing care (CCC) settings, where the bed may or may not be funded for rehabilitation. There was strong support that the severe stroke population can benefit from the same cadre of stroke expertise available in short term rehab, but offered in a less intense program and over a longer period of time. There was strong support that the continuum needs to formally include those who will take an extended period of time to reach their rehab goals. Most supported the delivery of this care within a CCC or geriatric setting rather than the rapid paced rehab setting. Concerns were raised that the outcome evidence for rehab with this population is limited. Discussion Question #5 – Nursing Home/HFA

Are there stroke patient populations who SHOULD be referred to a Nursing Home or HFA for their care? What scope of stroke rehab service SHOULD be available or accessible in these centres?

Participants felt that there was a small population who should be referred to the Nursing Home setting:

• Those, who because of stroke severity, did not have a rehabilitation goal; or • Those, whose home supports were unable to cope with the care requirements.

There was generalized agreement that those with severe strokes are often referred to the Nursing Home setting without a rehab assessment or access to rehab service. In terms of the scope of rehab service available in the Nursing Home setting, most discussion centered on the CCAC and services they deliver within this sector. This is highly varied as each CCAC has defined their own approach to service delivery in this sector. Some provide a consultation model; others provide a direct service model and there are varying criteria for determination of access to service. Another population was also identified within these discussions. Residents of Nursing Homes who are transferred to acute care, when they have a stroke, receive acute care and are then returned to the Nursing Home without access to rehab service. Participants felt that this population should have access to rehab service for increased functional status (toileting/feeding etc) as well as quality of life. Even when the final disposition is the Nursing Home their burden of care will be reduced

Appendix D


Reactivation and recreation were identified as appropriate components of stroke rehab in the Nursing Home setting. Discussion Question #6 – Day Hospital Stroke Rehab

What stroke patient populations are MOST APPROPRIATE for care in this type of setting?

Discussion Question #7 – Ambulatory Stroke Rehab

What populations can be cared for in a community based setting? What is the nature of the care required?

Ambulatory programs were discussed generally, as there are a number of variations in Day Hospital programs and different forms of ambulatory care across the GTA. Participants felt strongly that ambulatory programs could play a greater role in the continuum of stroke care. Ambulatory Stroke Care programs and services are identified as thinly resourced and having lengthy waiting lists (up to 4 months). Some felt that triage criteria were needed for appropriate placement in ambulatory rehab programs. Support for specialized expertise, concern about generalists in the community. Many felt that the difficulty accessing ambulatory stroke care resulted in the selection of inpatient acute care for some mild stroke populations as well as potentially extending inpatient rehab stays. All participants identified issues of transportation, including boundaries, and criteria for access to service as major barriers to successful ambulatory programs.

Discussion Question #8 - Stroke care in the Home

What patient populations can be managed at home with in-home service? or in combination with ambulatory rehab programs?

Many participants felt that care in the home is desirable for those:

• who have goals that are best addressed in the home environment; • who can’t get out; • with low endurance; • affected by transport difficulties; and • those with limited or frail supports.

Clients accessing a combination of in-home and ambulatory rehab programs is not current practice but was felt my many to warrant greater consideration. Currently, access to one modality often precludes access to the other.

Appendix D


Several expressed interest in CCAC having a dedicated stroke coordinator(s) much like the current model in place for ABI clients. Reintegration Reintegration back into the community with physical, emotional and social supports was seen as highly varied across the sector. This is seen as a gap between discharge and reintegration. There is a perceived need for greater formalization as well as some type of infrastructure to support and sustain reintegration activity. Gaps identified in certain areas for access to vocational rehab services.

Re-entry into the system Access to the system, post stroke or for those who have plateaued, is not easily accommodated. Some may access medical services but there is a need to access the interdisciplinary expertise as well. Discussion Question #9 – Private Sector Resources

What type of private resources are stroke patients and their families currently accessing?

General agreement that funds were limited but identified the following:

- Wide use of Speech language therapy; - Alternate therapies, massage, acupuncture; - Physiotherapy including those specializing in neuro rehab; - Audiology and evaluation; - Housing adaptation, supportive housing, equipment, and

supplies.

Summary Themes • 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 rehab programs; • Those with severe strokes experience the greatest difficulty with access to rehab; • Many severe stroke clients are referred to a nursing home without a trial of rehab; • Centers identify need for assistance with the most complex (ABI, behavioural); • The size of the population requiring lower intensity, longer duration rehab is large

and patients are cared for in a variety of different bed types; • Constraints in the availability of ambulatory stroke rehab programs and services

results in no service for many, and extended inpatient service for others.

Appendix D


• Opportunities to test the combination of ambulatory and home-based service warrants further study as a viable component of the stroke care continuum;

• Reintegration is an essential part of the continuum of stroke care and requires greater formalization and infrastructure.

• Re-entry in the system requires formalization in the continuum and access to specialized stroke care expertise.

Appendix E

National Ambulatory Care Reporting System (NACRS)

(October 1, 2000-March 31, 2001)

• 74% were categorized as urgent and arrived directly in the ER.

Direct Ambulance TotalResuscitation 49 64 113 2.7%Emergent 553 333 886 21.0%Urgent 1997 697 2694 63.7%Less-Urgent 272 70 342 8.1%Non-Urgent 111 10 121 2.9%Not Specified 71 71 1.7%Total 3053 1174 4227 100.0%

72.2% 27.8% 100.0%

GTA Residents presenting in ER with stroke

Disposition Cases %Discharge to Residence 1390 32.9%Not Seen By Any Health Care Provider 1 0.0%Left Against Medical Advice / Refused Treatment 11 0.3%Admitted (IP) to CCU or OR (Own Facility) 152 3.6%Admitted (IP) (Own Facility) 2467 58.4%Xfrd to Another Facility (Acute / Other) 165 3.9%Death in ER 27 0.6%DOA 3 0.1%Xfrd to ER (Own Facility) 2 0.0%Xfrd to Clinic (Own Facility) 9 0.2%Total 4227 100.0%

65.9%

0.7%

GTA residents, Discharge Disposition from Emergency

Appendix E

• Projected increases based on stroke incidence rates and methodology used in the body of this document.

Halton Toronto Durham Peel York GTACases 2000 217 1,648 284 415 220 2,784Full Year Equivalent 434 3,296 568 830 440 5,568Cases 2004 251 1,858 330 524 268 3,236Full Year Equivalent 502 3,716 660 1,049 536 6,473Cases 2008 295 2,056 384 638 328 3,711Full Year Equivalent 591 4,111 767 1,275 657 7,422% Increase 2004 16% 13% 16% 26% 22% 16%

2008 36% 25% 35% 54% 49% 33%

Cases 2000 4 19 6 1 30Full Year Equivalent 8 38 12 2 60Cases 2004 5 22 7 1 36Full Year Equivalent 10 45 14 3 72Cases 2008 6 25 9 2 43Full Year Equivalent 12 50 18 4 85% Increase 2004 24% 18% 19% 32% 21%

2008 52% 31% 47% 76% 42%

Cases 2000 100 753 163 209 188 1,413Full Year Equivalent 200 1,506 326 418 376 2,826Cases 2004 118 853 187 264 228 1,650Full Year Equivalent 235 1,706 374 528 457 3,300Cases 2008 138 933 217 321 280 1,879Full Year Equivalent 275 1,866 434 643 560 3,758% Increase 2004 16% 13% 15% 26% 21% 17%

2008 36% 24% 33% 54% 49% 33%

Admitted

Died

Other

Appendix F

Home Care Reporting System

FY 2000/01

• 60.6% admitted to program for:

- Adjustment to Altered Functional Status or - Delay or Prevent Deterioration.

Stroke Clients Seen during 2000/2001 7121Assessed for Other HC Program 115Criteria Service Not Required 52Patient / Family Refused HC 24Chronic 5987 87%Acute 881 13%From Institutions 4460 65%From Community 2408 35%Admitted prior to fiscal year 3324 48%Admitted during fiscal year 3544 52%

GTA Residents with Stroke, Referred to Home Care

Admitted 6868

Case Not Admitted 253 76%

Treatment Goal Clients %Healing of Wound 62 1%Return to Self Care Function 583 8%Return to Former Functional Level 815 12%Return to Total Self Care 106 2%Return to Total Care by Parents 88 1%Re-integration Into Community 187 3%Teach Treatment Protocol 311 5%Adjustment to Altered Functional Status 2,358 34%Delay or Prevent Deterioration 1,807 26%Assess Level of Care Required 427 6%Support During Gradual Deterioration 118 2%Not Indicated 6 0%Total 6,868 100%

Treatment Goal for GTA Residents admitted to Home with indication of Stroke

Appendix G

Needs Assessment and Plan for Integrated Stroke Rehabilitation in GTA

GTA Centres offering ambulatory, multi-disciplinary rehabilitation services for stroke survivors:

• Baycrest Centre for Geriatric Care • Credit Valley Hospital • Halton Healthcare Services – Milton • Halton Healthcare Services – Oakville • Humber River Regional Hospital – Church • Humber River Regional Hospital – Finch • Lakeridge Healthcare Corporation – Oshawa • Lakeridge Healthcare Corporation – Port Perry • Markham Stouffville Hospital • Riverdale Hospital • Rouge Valley Health System – Ajax • Rouge Valley Health System – Centenary • St. John’s Rehabilitation Hospital • The Scarborough Hospital – General • The Scarborough Hospital – Grace • Toronto Rehab • Trillium Health Centre – Mississauga • Trillium Health Centre – Queensway • West Park Healthcare Centre

Source: GTA Rehab Network, Clinical Committees’ Survey Report, June 2001 (Ambulatory data gathered in November 2000)

Documents

Needs Assessment and Plan for Integrated Stroke ... · Needs Assessment and Plan for Integrated Stroke Rehabilitation in the GTA February, 2002 _____ M.S. Monahan & Associates Inc.,