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Multiple sclerosis (MS) is a complex disease that negatively impacts a person's ability to participate in a wide range of important and meaningful activities1-4. MS rehabilitation interventions often focus on reducing symptoms, with the assumption that fewer symptoms will lead to improved participation in daily activities5-8. Yet, literature shows that engagement in necessary and desired activities requires more than symptom reduction - it requires people with chronic diseases like MS to apply their knowledge and skills to a complex self-management process9-11 that balances personal values, and activity and environmental demands. Core self-management skills include self-monitoring, problem-solving, decision-making, goal setting, action planning, and the ability to adjust plans when necessary12. Looking beyond MS, coaching interventions have enabled people with stroke13-16, traumatic brain injury17, and Parkinson's disease18, 19 to develop self-management skills and achieve personally meaningful activity goals. Occupational Performance Coaching (OPC) is a well-developed form of coaching that builds competence in core self-management skills and improves participation in daily activities20, 21. The investigator's preliminary work indicates that OPC is an acceptable and feasible intervention for people with MS22. The investigators now must determine if OPC reduces the impact of MS on participation in daily activities and increases the satisfaction of people with MS in performance of personally important daily activities. Therefore, the investigators will conduct a waitlist-control randomized clinical trial (RCT) with 30 adults with MS to determine if receipt of six OPC sessions improves participants' satisfaction with performance in daily activities (primary outcome). The investigators will also examine whether OPC reduces illness intrusiveness (MS impact), improves resilience, and improves autonomy and participation (secondary outcomes).
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| OPC | Experimental | Occupational Performance Coaching delivered by telephone |
|
| Waitlist control | No Intervention | Intervention provided after post intervention assessment |
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Occupational Performance Coaching | Behavioral | Six sessions of OPC delivered by telephone over 10 weeks. |
|
| Measure | Description | Time Frame |
|---|---|---|
| Change in Canadian Occupational Performance Measure | Measure of performance and satisfaction with performance and satisfaction on a scale of 1-10 where 10 indicates higher performance or satisfaction with performance. | Pre-intervention, 10 weeks, and 2 months post intervention |
| Measure | Description | Time Frame |
|---|---|---|
| Illness Intrusiveness Rating Scale | The Illness Intrusiveness Rating Scale captures induced interference of chronic disease and treatment on valued activities and interests. The scale is a brief self-report questionnaire that is composed of 13 items: health, diet, work, active recreation, passive recreation, financial situation, relationship with your spouse, sex life, family relations, other social relations, self-expression/ self-improvement, religious expression, and community and civic involvement. Respondents rate the degree to which their illness and/or treatment interfere with these domains using a seven-point scale (1- not very much, 7 - very much). A higher overall score (range13-91) indicates a higher level of illness intrusiveness. |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Affiliation | Role |
|---|---|---|
| Dorothy Kessler | Queen's University | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Queen's University | Kingston | Ontario | K7L 3N6 | Canada |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 38851554 | Derived | Kessler D, Franz M, Malakouti N, Rajachandrakumar R, Baharnoori M, Finlayson M. Randomized Controlled Trial of Occupational Performance Coaching for Adults With Multiple Sclerosis. Arch Phys Med Rehabil. 2024 Sep;105(9):1649-1656. doi: 10.1016/j.apmr.2024.05.022. Epub 2024 Jun 6. |
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| ID | Term |
|---|---|
| D009103 | Multiple Sclerosis |
| ID | Term |
|---|---|
| D020278 | Demyelinating Autoimmune Diseases, CNS |
| D020274 | Autoimmune Diseases of the Nervous System |
| D009422 | Nervous System Diseases |
| D003711 | Demyelinating Diseases |
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Waitlist control trial
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| Pre-intervention, 10 weeks, and 2 months post intervention |
| MS Impact Scale-29 | The MS Impact scale is a 29-item scale that measures the impact of MS on day-to day life on a scale from 1 (not at all) to 5 (extremely). Higher scores (range 29-145) indicate higher impact of MS on daily life. | Pre-intervention, 10 weeks, and 2 months post intervention |
| Connor-Davidson Resilience Scale-10 | The CDRS is a 10 item questionnaire used to measure participant's perception of their ability to cope and adapt to challenges. Scores range from 0-40 where a higher score indicates better resilience. | Pre-intervention, 10 weeks, and 2 months post intervention |
| Impact on Participation and Autonomy Questionnaire | The IPA provides a measure of limitations in participation and autonomy. The tool includes 39 questions across 5 domains: autonomy indoors, autonomy outdoors, family role, social life and relationships, and work and education. Participants rate each item on scale from 0 (very good) to 4 (very poor). Score range is 0-156 with higher scores representing poorer autonomy and participation. | Pre-intervention, 10 weeks, and 2 months post intervention |
| D001327 | Autoimmune Diseases |
| D007154 | Immune System Diseases |