Satisfaction with participation in multiple sclerosis and spinal cord injury
ABSTRACT 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).
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 χ(2) tests were used to examine the strength and direction of associations between demographic and symptom variables and responses to the participation item.
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.
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.
- [Show abstract] [Hide abstract]
ABSTRACT: Background Social participation is an integral part of everyday life in society; however, evidence about its association with Health-Related Quality of Life (HRQoL) in people with multiple sclerosis (MS) is lacking. Objective The aim of this study is to explore whether social participation is associated with the Physical Component Summary of HRQoL (PCS) and Mental Component Summary of HRQoL (MCS) in people with MS, controlled for age, gender, disease severity and disease duration. Methods The sample consisted of 116 consecutive people with MS (response rate: 75.8%; 72.4% women; mean age 40.3±9.8). People with MS completed the Short-Form Health Survey (SF-36) for measuring PCS and MCS and the Participation Scale, which measures the level of social participation. Disability was assessed using the Expanded Disability Status Scale (EDSS). The associations between social participation, PCS and MCS, were analysed using linear regression that controlled for sociodemographic and clinical variables. Results PCS was significantly associated with age, disease duration, EDSS and social participation. MCS did not show significant association with the studied variables. Overall, a multiple regression model explained 48% of the PCS variance, while the proportion of MCS variance explained was not significant. Conclusions Social participation was significantly associated with PCS, suggesting a possibility for intervention in this domain.27th Conference of the European Health Psychology Society, Bordeaux, France; 07/2013
- [Show abstract] [Hide abstract]
ABSTRACT: Abstract Purpose: To assess Life Satisfaction, using the Satisfaction with Life Scale (SWLS), and to analyze its psychometric properties in Multiple Sclerosis (MS). Method: Persons with MS (n = 84) recruited at the MS Centre of Catalonia (Spain) completed a battery of subjective assessments including the SWLS, the World Health Organization Quality of Life instrument and disability module (WHOQOL-BREF, WHOQOL-DIS) and the Hospital Anxiety Depression Scale-Depression (HADS-D); sociodemographic and disability status data were also gathered. Psychometric properties of the SWLS were investigated using standard psychometric methods. Results: Internal consistency (Cronbach's alpha coefficient) was 0.84. A factor analysis using a principal components method showed a one factor structure accounting for 62.6% of the variance. Statistically significant correlations were confirmed between SWLS with WHOQOL-BREF, WHOQOL-DIS and HADS-D. SWLS scores were significantly different between a priori defined groups: probable depressed versus nondepressed and participants perceiving a mild versus severe impact of disability on their lives. Conclusion: To the best of our knowledge, this study is the first to report on the psychometrics properties of the SWLS in persons with MS. It might be a valuable tool to use in appraising persons with MS through the continuum of care. Implications for Rehabilitation The Spanish version of the Satisfaction with Life Scale (SWLS) is a reliable and valid instrument in Multiple Sclerosis (MS). The SWLS is able to discriminate between participants with low or high scores on depressive symptoms or disability impact on life. SWLS might be useful through the continuum of care in persons with MS, including Rehabilitation Services.Disability and Rehabilitation 08/2013; 36(12). DOI:10.3109/09638288.2013.825650 · 1.99 Impact Factor
- [Show abstract] [Hide abstract]
ABSTRACT: Purpose: Factors that impact participation are of scientific and clinical importance. Participation in everyday activities among persons with multiple sclerosis (MS) can be compromised by various factors however the combined contribution of these factors to participation has not been explored. The aim of this study was to describe the relationship between cognitive impairment, physical disability and signs of depression and participation in daily life among persons with MS. Methods: Data from 200 participants were collected in an observational, prospective study. The majority was female, had mild physical disability, and an average age of 48.7. The impact of independent variables, including demographic and disease related data, levels of cognitive impairment, signs of depression and fatigue, on participation was investigated using path analysis. Results: Cognitive impairment was associated with restricted participation in domestic, leisure and outdoor domains. Restrictions in leisure and outdoor activities, but not domestic activities were related to signs of depression. Cognitive impairment was associated with the level of education and the level of physical disability. Conclusions: Increasing participation is an important outcome of rehabilitation. The results of this study suggest a multifactorial approach to intervention that considers physical, mental and emotional component to maximize participation among persons with MS. Implications for Rehabilitation Rehabilitation for persons living with multiple sclerosis (MS) should incorporate careful evaluation of physical disability, cognitive impairment and depression and their impact on participation. Clinicians need to evaluate participation in a variety of daily activities, including activities within and outside of the home, and leisure activities. Signs of depression may have a greater impact on participation in outdoor and leisure activities then on other activities.Disability and Rehabilitation 02/2014; 36(23). DOI:10.3109/09638288.2014.887797 · 1.99 Impact Factor