Getting on with the Rest of Your Life after Stroke: A Cross-Canada Program Aimed at Enhanced Life Participation, Prevention of Deterioration and Optimization of Health Care Utilization

Project Leader:

Nancy Mayo, McGill University

Project Team:

Mark Bayley, University of Toronto
Johanne Desrosiers, Universite de Sherbrooke
Janice Eng, University of British Columbia
Marilyn Mackay Lyons, Dalhousie University
Robert Teasell, University of Western Ontario
Carol Richards, Universite Laval
Jill Cameron, University of Toronto
Maria Huijbregts, University of Toronto
Aura Kagan, University of Toronto
Nancy Salbach, Univeristy of Toronto
Sharon Wood-Dauphinee, McGill University
Helene Carbonneau, Universite de Quebec a Trois-Rivieres
Ruth Barclay-Goddard, University of Manitoba

Project Summary:

In the fall of 2004, a group of rehabilitation researchers developed a protocol for a cross-Canada randomized trial aimed at enhancing life participation after stroke. In December 2004, the Canadian Stroke Network agreed to fund pilot work for this ambitious project, spread over six sites. The pilot funding permitted key aspects of the protocol to be developed and put in place:

• elements of the intervention have been chosen (physical activity, leisure and social);
• the assessment tools have been chosen and tested;
• community-based partner organizations have been identified; and,
• the intervention prototype has been tested for feasibility.

The primary objective of the main trial is to determine the extent to which participation in life’s roles can be optimized through the provision of a community-based structured program providing the opportunity for physical activity, leisure, and social interaction. A secondary objective is to estimate the extent to which participation is associated with health benefits including health-related quality of life and reduction of unplanned health-care encounters for the person with stroke and reduction of burden and improvement in quality of life for caregivers. In this context, the meaning of “participation” is as defined by the World Health Organization (WHO) and reflects both society’s and the person’s perspective. The target population will be persons living in the community who have completed all formal institution-based, in-patient and ambulatory, rehabilitative interventions. No restriction on “time since stroke” will be imposed. Excluded will be persons who are already enrolled in existing community based projects and persons with cognitive impairment. Six sites participated in the feasibility phase. Information emanating from these sites, as well as dissemination activities of the CSN and the Canadian Stroke Strategy, have led to interest expressed by other sites across Canada prepared to run the trial phase of this project. The study design is a two-period, site-stratified, randomized, crossover design with timing of entry randomized to immediate entry or delayed entry so that there is about a six-month time difference between groups. The intervention period is nine months and the follow-up period is an additional 6 months (total 15 mos.) The main outcome is the amount of time spent in meaningful activity during the day (outcome related to primary objective).

Sample size required to have sufficient power to detect between-group differences is 240 subjects from sites across Canada. As there is considerable interest in community reintegration, “snowball” entry of sites would make it more realistic to accumulate sample size and would also make the results locally responsive. The project will take 4 years to complete.

Download this publication about the project.