Date Presented 3/31/2017
Parkinson’s disease (PD) is a complex chronic condition that requires daily self-management to maintain health, function, and quality of life. This study investigated a generic self-management program with people with PD. Results will inform the development of a PD-specific self-management program.
Primary Author and Speaker: Erin Foster
Contributing Authors: Tess Greene, Courtney Waugh, Ryan Porritt
PURPOSE: Parkinson’s disease (PD) results in motor and nonmotor symptoms that negatively impact occupational performance, participation, and quality of life. Self-management programs aim to provide participants with skills and knowledge to meet daily health and functional goals and may help people better handle the challenges of living with PD. The Chronic Disease Self-Management Program (CDSMP) is a generic self-management intervention that improves self-efficacy and health outcomes for adults with a variety of chronic conditions; however, it has not been explicitly studied in people with PD. Our purpose was to investigate the effect of the CDSMP on people with PD and to understand PD participants’ perceptions of it.
DESIGN: This study used quasi-experimental mixed methods. Community-dwelling adults with PD were recruited from a movement disorders center and local chapter of the American Parkinson Disease Association on a rolling basis and allocated to the treatment or control group based on logistics and preference. Treatment participants (n = 29) completed the CDSMP (six weekly 2.5-hr group sessions), quantitative assessments of self-management outcomes at pre- and postintervention, and qualitative evaluation of their perceptions of the program at postintervention. Control participants (n = 19) completed the quantitative assessments at the same time points but did not participate in the qualitative portion.
METHOD: Quantitative assessment of self-management outcomes consisted of validated questionnaires of self-efficacy, depression, fatigue, illness intrusiveness, and health status. Mixed analysis of variance and individual effect sizes (categorized into ≥.50 = improvement, –.49 to .49 = no change, ≤–.50 = decline) were used to evaluate change on these outcomes. Qualitative evaluation consisted of a semistructured interview about overall experience, outcomes, enjoyment, and relevance of class content and structure and suggestions for improvement. Interviews were recorded, transcribed verbatim, and synthesized using thematic analysis. Topics were also rated on 10-point Enjoyment and Relevance scales (10 = highest) and summarized using descriptive statistics (M ± SD).
RESULTS: Groups were equivalent on demographic and clinical characteristics (p ≥ .12). There were no treatment effects for the quantitative outcomes (p ≥ .18), nor were there group differences in the proportions of participants who improved, stayed the same, or declined on these outcomes over the course of the study, χ2 ≤ .95, p ≥ .19. Overall, participants rated the content as enjoyable (7.5 ± .5) and relevant (8.0 ± .5); the most popular aspects were fall prevention, communication, and brainstorming. In addition to general satisfaction with the experience and format, qualitative analysis revealed two main themes: (1) need for PD-specific content and (2) benefit from socialization with others with PD.
CONCLUSION: Our quantitative results indicate that the CDSMP did not improve self-efficacy, depression, fatigue, illness intrusiveness, or health status in this sample of people with PD. These results may have been limited by aspects of the study design (e.g., sample size, nonrandomized, outcome measurement). Alternatively, they may suggest that the CDSMP does not adequately address the complex issues faced by people with PD. The latter option was reinforced by the qualitative theme related to the need for more PD-specific content. These findings will guide the development of a self-management program that incorporates PD-specific information and evidence while maintaining the enjoyable, relevant, and beneficial aspects of the CDSMP. The eventual impact of this work will be a practical and evidence-based intervention that is acceptable to and addresses the needs of people with PD to improve their function and quality of life.
References
Lorig, K., Holman, H., Sobel, D., Laurent, D., González, V., & Minor, M. (2006). Living a healthy life with chronic conditions: Self-management of heart disease, arthritis, diabetes, asthma, bronchitis, emphysema and others. Boulder, CO: Bull Publishing.
Lorig, K. R., Sobel, D. S., Stewart, A. L., Brown, B. W., Jr., Bandura, A., Ritter, P., . . . Holman, H. R. (1999). Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization: A randomized trial. Medical Care, 37, 5–14.
