Abstract
Purpose. Patients with neuromuscular diseases (NMDs) do not always receive appropriate allied health care. This is partially because of the large heterogeneity among these conditions, some of which are quite rare. Individual allied health care professionals, therefore, have relatively little opportunity to develop relevant experience with these patients. To overcome this problem, we developed specialist multidisciplinary advice regarding management of patients with NMD for occupational therapy (OT), physical therapy (PT) and speech therapy (ST) in a primary care or rehabilitation setting. The aims of the study were to explore to what extent this allied health care advice was implemented with a focus on the amount of therapy received and to explore possible barriers to implementation.Methods. One-hundred two patients visited the Neuromuscular Centre Nijmegen for OT, PT and ST consultations. Integrated allied health care advice was written on the basis of these consultations and a multidisciplinary meeting. All patients, their therapists and rehabilitation physicians received this advice. Following the advice, questionnaires were sent out at baseline and at 6 months follow up, collecting data on implementation of the amount of therapy suggested and on possible barriers for adherence.Results. Advice for ST and OT was fully implemented in primary care, but only partially (58%) in a rehabilitation setting. Advice to reduce the amount of PT was implemented in only 15% of the cases. Possible barriers were related to the advice itself (feasibility of treatment duration, correctness and completeness), the patient (motivation) and the professional (experience in treatment of NMDs). Therapists expressed a desire to have the opportunity to discuss the treatment advice with the multidisciplinary team.Conclusions. The extent to which multidisciplinary advice was implemented differed for OT and ST compared to PT and for the setting (primary care or rehabilitation). Possible barriers were identified at different levels. We recommend follow-up telephone calls to provide therapists opportunity for discussion.
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