Satisfaction with participation in multiple sclerosis and spinal cord injury

Abstract

Purpose: To validate a single item self-report of satisfaction with participation in two groups with differing patterns of symptoms and disease progress, multiple sclerosis (MS) and spinal cord injury (SCI). Method: Community-dwelling adults with MS (N = 1,271) or SCI (N = 620) completed a battery of self-report questionnaires covering demographic information, disease specific measures, symptoms, psychological distress, social-environmental issues, and overall well-being. They were also asked to rate satisfaction with participation: How satisfied are you with your ability to take part in activities that are important to you: not satisfied, somewhat satisfied, satisfied, or very satisfied. Kendall’s tau rank correlation coefficient and χ² tests were used to examine the strength and direction of associations between demographic and symptom variables and responses to the participation item. Results: Although the demographics of the MS and SCI differed in predictable ways, younger participants and those employed report more satisfaction with participation. Ratings of satisfaction with participation were also consistently associated with a number of variables including less fatigue, pain, depression, stress, anxiety, as well as higher overall measures of well-being across the two populations. Conclusions: More research is needed to better understand the multiple dimensions that comprise participation and to develop robust and sensitive measurement tools. A global rating of satisfaction with participation using one item has a number of potentially useful applications including description of case mix in clinical trials.

Implications for Rehabilitation

• Restrictions in participation are faced by many adults with disability including those with multiple sclerosis or spinal cord injury.

• These restrictions are associated with an array of biopsychosocial variables.

• A psychometrically sound indicator of satisfaction with participation could be used to describe the severity of condition, to adjust case mix in clinical trials, or to track global change disability status.

Keywords::

• Measurement
• multiple sclerosis
• quality of life
• spinal cord injury

Declaration of interest: The contents of this publication were developed under a grants from the Department of Education, NIDRR grant number H133B031129 & H133B080024 (Multiple Sclerosis Rehabilitation Research and Training Center and Aging with Disability Rehabilitation Research and Training Center) and the National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institute of Health (Grant 5U01AR052171-03) (University of Washington Center on Outcomes Research in Rehabilitation). However, those contents do not necessarily represent the policy of the Department of Education, and you should not assume endorsement by the Federal Government.