1. Nancy E. Mayo James McGill Professor McGill University (Rehabilitation, Epidemiology, Health services, Outcomes)

2. Where are we and where are we going? The scientific maturity of a discipline is defined by its research In particular how far around the health care evaluation cycle there is evidence to drive: clinical practice public health programming,and health system policy

3. Health Care Evaluation Cycle Burden of disease Causation Efficacy Effectiveness Efficiency Implementation After P Tugwell, 1985

4. Revised Research Cycle Burden/Consequences/ Outcomes Mechanisms/ Determinants Strategies Interventions Programs Implementation EVALUATION

5. Strategy, Intervention, Program

6. Stroke Research in Quebec: Now Poor man’s structured review (busy woman’s review) Pubmed search for “stroke” and “Quebec” Last five years HSFQ and CSN recently funded research Ongoing studies that I am aware of Bias towards clinical studies (no animals) Omitted studies where stroke is a complication and not the primary focus Not comprehensive but wide ranging If not done now, it may have been done in past

7. Revised Research Cycle Burden/Consequences/ Outcomes Mechanisms/ Determinants Strategies Interventions Programs Implementation

8. What Clinical Research is Being Done?

9. What Research is Being Done? 30 clinical studies 130 animal studies

10. Clinical Research Pyramid Burden / Consequences Etiology/ Mechanisms / Determinants Strategies Interventions Programs Implementation

11. Burden / Consequences / Outcomes 1. Incidence: We are winning the battle against stroke Rates of ischemic stroke rates are decreasing Rates of hemorrhagic strokes increasing Decline outweighs increase Still approximately 8000 per year (Mayo et al., Neurology, 2007)

12. © Nancy E. Mayo 2007 Mayo et al. Neurology, 2007

13. Burden / Consequences / Outcomes 1. Consequences / Outcomes of stroke Moving on from mortality and morbidity Huge emphasis on disability and health-related quality of life All aspects of disability from language to participation Participation (in personal, family and societal roles) is current emphasis reflecting last frontier of recovery Impact of “mild” stroke Little on costs of care

14. Mayo et al. Arch Phys Med Rehabil, 2001

15. New stuff (new statistical methods) Mental health (depression) (Miller et al. newly funded) Apathy

16. Mental health over 1 year

17. 5-Group Trajectory Model 3% 7% 33% 50%

18. Revised Research Cycle Burden/Consequences/ Outcomes Mechanisms/ Determinants Strategies Interventions Programs Implementation

19. What do we need to know about stroke risk factors and why? For clinical management knowledge of biological profile will guide clinical decision-making. However, for purposes of population and public health, individuals need to be engaged in reducing their personal risk of adverse health outcomes. For this approach, knowledge about risk factors that are directly under the control of the person is highly relevant.

20. Sources of Data Santé Quebec Survey 1992 & 1998 RAMQ MedEcho Death Certificates 2003 to 07 Linkage using unique NAM Respondents > 20 years Stroke CIHR: Mayo, Goldberg, Brophy, Côté, Hanley Stroke 17,862 people 140,000 person-years 264 strokes to 2003

21. Identified Medical Conditions MenWomen NHR 95% CI NHR Atrial fibrillation 480-,-443.1 1.4, 7.1 Hypertension8791.1 0.8, 1.7 1351.2 Renal disease 421.5 0.4, 5.9 554.9 2.4, 10.0 Diabetes2872.1 1.3, 3.6 3592.6 1.7, 4.0 PVD532.6 1.1, 6.0 300.9 0.1, 6.6 CHF942.1 1.0, 4.6 741.8 0.8, 4.2 IHD5381.7 1.1, 2.6 4280.8 0.5, 1.4 0.5, 1.4 HR – Hazard ratio

22. Smoking and Obesity MenWomen NHR 95% CI NHR Never smoke 30981 Regular smoke 17892.7 1.4, 5.1 29012.0 1.2, 3.2 Ex-smoke27301.6 0.9, 3.0 30481.9 1.2, 2.9 Occasional2311.9 0.6, 6.8 2634.3 1.8, 10.1 Missing1451.0 0.3, 3.1 1542.1 1.1, 4.0 35 to 39 vs 19 1362.9 1.1, 8.2 301.4 0.5, 4.0 > 40 vs 19 494.9 1.0, 17. 740-,-

23. Revised Research Cycle Burden/Consequences/ Outcomes Mechanisms/ Determinants Strategies Interventions Programs Implementation

24. Studies of single agents or modalities Lots in rehabilitation, highly selected study subjects, small sample size Targeting Arm use Gait Balance Innovations Virtual reality (Richards and Fung)

25. Training Levels (1-3) Indoor & Outdoor VEs

26. Revised Research Cycle Burden/Consequences/ Outcomes Mechanisms/ Determinants Strategies Interventions Programs Implementation

27. Interventions (all rehabilitation) Arm use Mobility, walking Driving Bad News Arm treatment that Quebec can afford does not work (Desrosiers, Higgins) Walking therapy does work but no mechanism to implement

28. Revised Research Cycle Burden/Consequences/ Outcomes Mechanisms/ Determinants Strategies Interventions Programs Implementation

29. Programs Day hospital Early supported discharge Better quality of life outcomes and reintegration Cost $1000 to provide 4 weeks of care at home Saved $3000 to the health system Contributed to a meta-analysis Implementation plan (Not in my life-time)

30. A Cross-Canada Study Aimed at Enhanced Life Participation, Prevention of Deterioration and Reduction of Health Care Utilization 12 sites including 2 to 4 in Quebec

31. The Challenge….. To package the needs and desires of stroke survivors and the evidence into sustainable community- based programs

32. $$$ APHASIA STROKE LIFE PARTICIPATION

33. n To assist participants to formulate life goals that are then staged into a series of realistic projects that the person can meet using developing internal resources and existing community-based resources The Mission of Mission Possible

34. Revised Research Cycle Burden/Consequences/ Outcomes Mechanisms/ Determinants Strategies Interventions Programs Implementation

35. Guidelines for nutrition, carotid endarterectomy Stroke Engine (Nicol Korner-Bitensky) Score IT

36. www.medicine.mcgill.ca/strokengine Introduction of a stroke rehabilitation web-based tool for knowledge uptake

37. “Click”

38. Stroke Canada Optimization of Rehabilitation by Evidence-Implementation Trial Mark Bayley and Sharon Wood Dauphinee

39. SCORE Implementation Trial (SCORE-IT) World’s largest research project involving implementation of evidence-based care by stroke rehabilitation professionals A large scale, multi-centered (20 sites), cluster randomized trial Targeting 2000 persons with stroke during inpatient rehabiliation

40. Measurement 32 studies on measurement of stroke related outcomes Response-shift Balance Neglect Movement Function - Finch L, et al. JRM 2008 Driving Stroke preference (quality of life) Nursing interventions Dementia

41. Modern Measurement Create “ruler” like measures with mathematical properties Reduce response burden Not all people have to answer or be tested on all or even the same items (Example: Finch et al. 2008) Ruler-like Measure of Function at 3-days and 3 months post-stroke

42. FM-3Days 38 Items FM-3 Months 44 Items 0-1000-510-520-100 † Gait speed >1.3 m/s 52100 51Bounce a ball † Do demanding activities as before 5198 9950Tandem Walk for 2 m 5091 9549Trace leg pattern quickly Bounce a ball 4990 9348Walk on toes 2 m † Able to do activities/ work as before 4887 8244Touch fingertips quickly Do heavy housework without difficulty 4479 8043Walk 50 feet independently Stand affected leg for 5s 4378 7941 † Climb one flight of stairs no difficulty *Unable to do physically demanding activities 4173 7942Quick ankle circumduction Touch fingertips quickly 4273 7840 † Walk down 3 stairs normally Stand with one foot in front 30sec 4072 7639Trace pattern with leg External rotation of the arm 3968 7638 † Get on & off toilet independently Clip toe nails without difficulty 3867 5721*Turn to look behind turn only Finger extension & abduction 2148 5620*Walk 50 feet with assistance Flex arm 90 supinate & pronate 2044 5319*Get on & off toilet with help Bathe without difficulty 1944 4516Toe ext & ankle plantarflexion Oppose little finger and thumb 1641 4415 † Stand to sit with hands *Walk in the house 1540 4114 † Fully put hand on sacrum Dress top half of body 1439 4013*Stand to sit uncontrolled Open hand from closed 1334 3912Dynamic righting feet on floor † Full knee flexion 1232 3811Finger flexion & extension *Toilet on time with some difficulty 1132 32Resist Trunk rotation Sit unsupported 25 11Facilitate hip flexion Facilitate finger flexion 11 0 0 00

43. Research Agenda: Short List Optimizing stroke prevention – apply what we know Optimizing stroke processes of care - access to care Repair the brain / Fix the arm Remove apathy as a barrier to participation Emotional consequences of stroke Cognitive impairment and function Participation – community is next stroke frontier Caregivers (???) Modern psychometrics to create ruler-like measures of our outcomes

44. Who should be doing the research? Multi-disciplinary research teams Best of breed For every complex question there is a simple answer and it is probably WRONG (Mary Law) All the easy research has been done The hard stuff is left to us to do Get Busy

45. Thank you