Article

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.

Langue : ANGLAIS