In July this year Edith Cup, occupational therapist in Radboud University Nijmegen – Medical Centre, will defend her thesis “Occupational therapy, physical therapy and speech therapy for persons with neuromuscular diseases. An evidence based orientation.
This thesis composed of published and submitted articles discerns 3 parts: professional perspective in various contents, scientific perspective, and client perspective. In the first part the recommendations of professionals in a multidisciplinary setting (Neuromuscular Expertise and Consulting Centre) were compared to the primary care or rehabilitation setting. Overuse of physiotherapy was noticed, while underuse of occupational and speech therapy, but also of physiotherapy was seen. Advices were not always implemented, related to the feasibility of the advice, the motivation of the patient, and the professional (experience with NMD).
In the second part systematic reviews are described on the effectiveness of physiotherapy, occupational therapy, and speech therapy. Very few studies were found for effectiveness of occupational therapy (2 studies on hand training) and speech therapy (1 on head position). For physiotherapy aerobic exercises combined with strengthening were likely to be effective.
The third part concerns the client perspective: in order to match health care better to the needs of couples with MD1 a qualitative study was performed with in-depth interviews. This study indicates that people with MD1 and their partners experience a host of problems, some of which are unexpected, underestimated and neglected with a mismatch between health services and health needs.
Recommendations based on these studies are the use of a chronic care model, exchange of knowledge from expert teams to community, and self-management programs.
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