A comprehensive rehabilitation programme tailored to the needs of adults with muscular dystrophy

Abstract

Objective: To assess if activities of daily living (ADL), coping and quality of life could be improved in adults with muscular dystrophy through a comprehensive rehabilitation programme. Design: Quasi-experimental, controlled clinical study comparing patients with similar age and disease aspects. Setting: Two different counties in Sweden, being either study or control setting. Subjects: The study group comprised 37 adults (21 women, 16 men; mean age 50 years), while the control group comprised 39 people (25 women, 14 men; mean age 46 years). Interventions: Four rehabilitation sessions tailored to different medical, physical and psychosocial needs of the patients, comprising a total of 10 days over a period of 18 months. Main measures: ADL, the Mental Adjustment to Cancer Scale measuring coping strategies, the Sickness Impact Profile measuring health-related quality of life, the Hospital Anxiety and Depression Scale, and the Psychosocial Well-being Questionnaire. Results: No significant differences were found between groups with regard to the outcome measures. There was increased dependence on others in ADL after 18 months in both groups, but it was more pronounced in the control group. Furthermore, a clear trend was observed in the data with regard to coping patterns, the control group using more coping strategies such as ‘Helplessness/hopelessness’ ( P=0.057), ‘Anxious preoccupation’ ( P=0.085) and ‘Fatalistic’ ( P=0.073) when being compared to the study group. Conclusions: No apparent effects on ADL were found from the rehabilitation programme, although there was a tendency of reduction of maladaptive coping patterns in the study group. This initial study may provide the rationale and basis for a randomized controlled trial.