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Development and Feasibility of an Evidence-Based Patient Education Program for Managing Fatigue in Multiple
Maria Janina Wendebourg1, Lena Katharina Feddersen1, Stephanie Lau1
1Institute of Neuroimmunology and Department of Neurology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany (MJW, LKF, SL, CH, JP); Nursing Research Unit, Institute of Social Medicine, University of Lübeck, Lübeck, Germany (SK); and Health Psychology Section, Institute of Psychiatry, King's College London, London, UK (RM-M).
Background:
Multiple sclerosis (MS) is an inflammatory and neurodegenerative disease of the central nervous system. Fatigue is a common and disabling symptom, often causing decreased quality of life, social withdrawal, and unemployment. We developed and studied the feasibility of a cognitive-behavioral group intervention to manage fatigue in MS. We aimed to integrate the concepts of cognitive-behavioral therapy and evidence-based patient information.
Methods:
We conducted patient interviews and a focus group to assess patients' interest in and need for fatigue self-management training and developed the program accordingly. The program consists of six 90-minute modules, which were structured with the use of moderation cards, helping to guarantee treatment fidelity. The program was tested on three pilot groups (N = 16) in a rehabilitation center. Fatigue, depression, and coping self-efficacy were assessed at baseline and after the intervention. Acceptance and general satisfaction with the program were also evaluated.
Results:
Patient interviews elicited different characteristics of fatigue, suggesting that patients had different requirements. The program was very acceptable to patients. Pre-post assessments of the pilot study showed significantly improved scores on the Coping Self-Efficacy Scale (P = .013) but not on the Fatigue Scale for Motor and Cognitive Functions and the 30-item Inventory of Depressive Symptomatology.
Conclusions:
These preliminary results suggest that this program is a feasible cognitive-behavioral group training program that may improve coping self-efficacy and has the potential to subsequently reduce fatigue. The next step is evaluation of the program in a randomized controlled trial.
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