Rehabilitation for Charcot Marie tooth: a survey study of patients and familiar/caregiver perspective and perception of efficacy and needs.

Background: Charcot Marie Tooth (CMT) disease is the most common inherited polyneuropathy. At the moment there is no pharmacological therapy for this pathology and the conservative treatment is mostly based on rehabilitation program. Moreover there is no medical consensus on it and the perception of its efficacy is mostly clinician-oriented.

Aim: To evaluate, through ad hoc self-administered questionnaires, the patient and family/caregiver perspective on rehabilitation access and perceived benefit from it.

Design: Observational survey study.

Setting: Clinical and genetic records of in and out-patients of third level hospitals and a patients association (ACMT-Rete) and familiar/caregiver.

Population: Patients affected by CMT and familiar/caregiver.

Results: Questionnaires showed that patients perceive physical and mental benefit from rehabilitation, but also perceived that do not perform the best rehabilitation program for their pathology. Familiar and caregiver, are not sure that rehabilitation is effective for their kin, probably because the benefits are too small to be seen by someone other than the patient.

Conclusion: The study shows as the lack of a consensus on rehabilitation tailored on CMT patients need is perceived by patients and familiar/caregiver.

Clinical Rehabilitation Impact: The knowledge of patients perception is very important in order to obtain the best rehabilitation program for CMT disease.