Sara McEwen

Disablement following stroke

PURPOSE Stroke is the most disabling chronic condition, newly affecting 35000 persons in Canada each year. Because of declining fatality, a growing number of persons will have to cope with stroke-related disability. The purpose of this paper is to describe the disabilities experienced by persons with stroke during the first year and explore the evolution of impairment, disability, handicap and health-related quality of life. SUBJECTS The data for this paper come from a series of longitudinal and cross-sectional studies, collectively known as the McGill Stroke Rehabilitation Research Program. RESULTS Within the first week post-stroke, getting out of bed and walking over a short distance, even with assistance, was a strong predictor of discharge home. Most of the improvement in measures of impairment and disability occurred during the first month and, by 3 months, there was still considerable room for improvement in all measures: 85% of persons were still impaired on gait speed, 78% had not reached age-specific norms for upper extremity function, 68% still demonstrated slow physical mobility, 37% needed some assistance with basic activities of daily living and 29% were still impaired on balance. By 1 year, 73% of persons scored the maximum for basic activities of daily living but 51 and 67% of persons reported their physical health and mental health to be lower than expected. Among a hardy group of stroke survivors, still living in the community 1 year post-stroke, the most striking area of difficulty was endurance, as measured by the 6 minute walk test. Those subjects well enough to complete this task (50% of sample) were able to walk, on average, only 250 metres, equivalent to 40% of their predicted ability. This series of snapshots taken at different points in time suggests that much of the improvement in impairment and disability occurs during the first month and then reaches a plateau. Handicap and quality of life continue to be issues later. Rehabilitation strategies need to consider the multifaceted nature of disablement, which in itself changes with time post-stroke.

Counting what counts: A framework for capturing real‐life outcomes of aphasia intervention

Background: The initial motivation was our inability to capture the important but often elusive outcomes of interventions that focus on making a difference to the everyday experience of individuals with aphasia and their families. In addition, a review of the literature and input from stakeholder focus groups revealed the lack of an integrated approach to outcome evaluation across diverse approaches to aphasia intervention. Input from focus groups also indicated that existing classifications and models offering potential solutions are not always easily accessible and user friendly. This research has been generously funded by a grant from the Ontario Ministry of Health and Long Term Care. The views expressed here do not necessarily reflect those of the Ministry. The authors thank staff at the Aphasia Institute and members of the Ontario Aphasia Centres Interest Group for their participation in the project, Drs Audrey Holland and Roberta Elman for useful feedback on earlier drafts of this article, Laura Dickey for administrative support, and Carmela Simone and Meghan Roberts for development of pictographs. Aims: We aimed to create a user‐friendly conceptual framework for outcome measurement in aphasia that included a focus on real‐life outcomes of intervention and could be easily accessed by clinicians, researchers, policy makers, funders, and those living with aphasia. We wanted to build on existing work, e.g., that of the World Health Organisation, simplify presentation for accessibility, and make specific adaptations relevant to aphasia. By providing a common context for a broad range of outcome tools or measures, we hoped to enable more efficient and effective communication between and among all stakeholders. Main contribution: Living with Aphasia: Framework for Outcome Measurement (A‐FROM) is a conceptual guide to outcome assessment in aphasia that is situated within current thinking about health and disability. This simple platform can be used to frame and broaden thinking concerning outcome measurement for aphasia clinicians and researchers while enhancing the potential for meaningful communication between the clinical community, policy makers, and funders. By integrating Quality of Life and including domains related to environment, participation, and personal identity in the same framework as impairment, the importance of outcomes in all these areas is acknowledged for aphasia in particular and disability in general. A‐FROM has the potential to be used as an advocacy tool. Conclusions: This article is the first presentation of A‐FROM as an alternate guide to outcome measurement in aphasia. Initial ideas regarding applications are discussed. Further development and applications await input from our community of practice.

Cognitive strategy use to enhance motor skill acquisition post-stroke: A critical review

Objective: The objective of this critical review was to examine the literature regarding the use of cognitive strategies to acquire motor skills in people who have had a stroke, to determine which strategies are in use and to compile evidence of their effectiveness. Search terms: A computerized search of a range of databases was conducted using the following search terms: stroke, cerebrovascular accident; combined with strategy training, learning strateg*, cognitive strateg*, metacognitive strateg*, goal setting, goal planning, goal attainment, goal direct*, goal orient*, self talk, imagery, mental practice, self evaluat*, ready*, attentional focus*, problem solv*, goal management; combined with motor, mobility, activit*, skill, task, function, ADL. Results: Twenty-six articles were reviewed. Seven studies investigated general cognitive strategies and 19 investigated task-specific strategies. The most commonly studied task-specific strategy was motor imagery. Findings suggest that general strategy training improves performance in both trained and untrained activities compared to traditional therapy; and that a specific motor imagery protocol can improve mobility and recovery in the affected upper extremity in people living with the chronic effects of stroke. Conclusion: This foundational evidence supports the further development of novel cognitive strategy-based interventions with the intention of improving long-term stroke outcomes.

Exploring a cognitive-based treatment approach to improve motor-based skill performance in chronic stroke: Results of three single case experiments

Primary objective: Early evidence suggests the use of cognitive strategies has potential to improve skill performance in people living with the effects of stroke, but no specific protocol has been identified. This study aimed to explore the potential of using the Cognitive Orientation to daily Occupational Performance (CO-OP) protocol to improve the functional performance of adults with chronic stroke. Research design and methods: A single case experimental design study with two replications was conducted. Three community-dwelling participants were recruited. Each selected three functional goals for the focus of the CO-OP intervention. Multiple video recorded data points were collected at baseline, during intervention, post-intervention and at 1-month follow-up. Results: The nine goals selected varied widely, e.g. using a computer mouse, bicycling and yoga. An independent observer used the observational Performance Quality Rating Scale (PQRS) to rate performances throughout. Using the 2 SD band method to analyse the data, each participant showed significant performance improvements in at least two goals during the course of the intervention and at follow-up. Two participants had an additional goal show significant improvement at follow-up. Conclusion: Results provide preliminary evidence that CO-OP is associated with significant performance improvements in self-selected functional goals.

Inter-task transfer of meaningful, functional skills following a cognitive-based treatment: Results of three multiple baseline design experiments in adults with chronic stroke

The transfer of skills learned in rehabilitation to new skills in the home has hitherto been notoriously difficult to achieve. The Cognitive Orientation to daily Occupational Performance (CO-OP) treatment approach has been associated with improved performance in people living with stroke, but the specific impact on transfer to untrained skills has not been investigated. The objective of the study was to investigate the capacity of CO-OP treatment to improve performance in both trained and untrained self-selected skills in adults living with stroke. A single case experiment with multiple baselines across skills was conducted, with two replications. The participants self-selected four skills; three were trained using CO-OP; the fourth was not. Using video recording, data points were collected at multiple baselines, during intervention, post-intervention, and at follow-up. The Performance Quality Rating Scale (PQRS) was used by an independent rater to score performances. The two-standard deviation band method was used to determine the significance of improvements. At follow-up, significant performance improvements were seen in all three single case experiments in all trained and untrained skills. A cognitive-based approach was associated with improved performance in trained and untrained skills in three adults with chronic stroke; further controlled research is warranted.

Exploring the feasibility of videoconference delivery of a self-management program to rural participants with stroke.

Moving On after STroke (MOST(R)) is a multimodal, psycho-educational, and exercise self-management program for people with stroke and their caregivers. The objective of this study was to explore the feasibility of videoconference delivery to rural communities. Seven participants, their caregivers, and two facilitators formed one group, located in an urban center. Five participants and their caregivers from two remote locations were connected by videoconference. Feasibility was assessed by examining recruitment and attendance rates; program adaptations; and participant, facilitator, and staff perceptions. Data sources included logs, surveys, focus groups, and interviews. To examine preliminary outcomes, goal attainment, balance, mood, participation, and walking endurance were measured pre-, post-, and 3 months following intervention. Twelve participants were recruited in 3 weeks. Attendance rates were 89.8% for the local group and 70.4% for the remote group. Program adaptations, facilitation strategies, and involvement of onsite support promoted the success of the videoconference delivery. Participants reported that the program provided people with stroke as well as caregivers with greater awareness of stroke, increased social support, and improved ability to cope. They reported a decrease in loneliness by sharing with others in a similar situation, even if they were in a different community. Pre-post improvements were seen in goal setting, mood, balance, balance confidence, and walking endurance. Videoconferencing is a feasible method for the dissemination of the MOST program to rural areas. This form of delivery is associated with improvements in goal achievement, mood, balance, and endurance, and is well received by all participants.

Combined Cognitive-Strategy and Task-Specific Training Improve Transfer to Untrained Activities in Subacute Stroke: An Exploratory Randomized Controlled Trial.

Purpose. The purpose of this study was to estimate the effect of the Cognitive Orientation to daily Occupational Performance (CO-OP) approach compared with usual outpatient rehabilitation on activity and participation in people <3 months poststroke. Methods. An exploratory, single-blind, randomized controlled trial, with a usual-care control arm, was conducted. Participants referred to 2 stroke rehabilitation outpatient programs were randomized to receive either usual care or CO-OP. The primary outcome was actual performance of trained and untrained self-selected activities, measured using the Performance Quality Rating Scale (PQRS). Additional outcomes included the Canadian Occupational Performance Measure (COPM), the Stroke Impact Scale Participation Domain, the Community Participation Index, and the Self-Efficacy Gauge. Results. A total of 35 eligible participants were randomized; 26 completed the intervention. Post intervention, PQRS change scores demonstrated that CO-OP had a medium effect over usual care on trained self-selected activities (d = 0.5) and a large effect on untrained activities (d = 1.2). At a 3-month follow-up, PQRS change scores indicated a large effect of CO-OP on both trained (d = 1.6) and untrained activities (d = 1.1). CO-OP had a small effect on COPM and a medium effect on the Community Participation Index perceived control and on the Self-Efficacy Gauge. Conclusion. CO-OP was associated with a large treatment effect on follow-up performances of self-selected activities and demonstrated transfer to untrained activities. A larger trial is warranted.

Occupational performance coaching for stroke survivors: a pilot randomized controlled trial protocol.

Background. Many stroke survivors report participation challenges. Occupational Performance Coaching for stroke survivors (OPC-Stroke) is designed to assist stroke survivors to develop the ability to plan and manage engagement in occupation. This approach combines emotional support, individualized education, and goal-focused problem solving to promote occupational engagement. Purpose. This study will explore the potential efficacy of OPC-Stroke and the feasibility of the research methods for use in a larger trial. Method. A pilot randomized controlled trial will be undertaken. Participants will be randomly assigned to receive 10 sessions of OPC-Stroke or usual care. Participation, perceived goal performance, satisfaction and self-efficacy, emotional well-being, and cognition will be measured at three time points. Implications. This research will test the potential usefulness of OPC-Stroke as well as the study methods, and thereby inform the continuing development of OPC-Stroke and further studies to measure its effectiveness.

I didn't actually know there was such a thing as rehab: survivor, family, and clinician perceptions of rehabilitation following treatment for head and neck cancer.

PurposeThe purpose of this study was to obtain first-hand contributions from survivors, family members, and front-line health care professionals regarding the rehabilitation needs for head and neck cancer (HNC) patients, to inform development of a rehabilitation intervention.MethodsThe researchers conducted a series of focus groups with the three key stakeholder groups.ResultsA total of seven focus groups with 40 participants were conducted, two with survivors, one with family members, and four with health care professionals. All three participant groups reported that motivation based on a strong desire to return to meaningful roles and activities, and rehabilitation resources embedded within the cancer system were important facilitators of functional recovery. Lack of access to rehabilitation services was a concern expressed repeatedly.ConclusionWhile generalization is limited by the small sample size, findings include a comprehensive list of rehabilitation needs following treatment for HNC, factors that facilitate and hinder recovery of functional health, and specific suggestions for the development of rehabilitation consult intervention for survivors of HNC.

Rehabilitation Education Program for Stroke (REPS): Learning and Practice Outcomes.

Introduction: New research knowledge acquired from Web‐based sources may have a better chance of being translated into practice when accompanied by additional educational strategies. This study was undertaken to investigate that hypothesis. Methods: The Rehabilitation Education Program for Stroke (REPS) combines a self‐directed online learning module with support from peer mentors, technical skills workshops, and organizational supports. Participants completed learning tests and practice surveys before and after the program and at a 6‐month follow‐up. Results: Learning and self‐reported practice outcomes improved in the areas of assessment, client‐centered practice, support for family and caregivers, and detecting depression. Participants also identified and reported specific strategies for individual and programmatic practice change. Discussion: A multifaceted, interdisciplinary online education intervention can positively influence stroke rehabilitation practices.