title: Rehabilitation for Charcot Marie tooth: a survey study of patients and familiar/caregiver perspective and perception of efficacy and needs.
abstract: 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.
  
  
  OBJECTIVE
  To evaluate, through ad hoc self-administered questionnaires, the patient and family/caregiver perspective on rehabilitation access and perceived benefit from it.
  
  
  METHODS
  Observational survey study.
  
  
  METHODS
  Clinical and genetic records of in and out-patients of third level hospitals and a patients association (ACMT-Rete) and familiar/caregiver.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  The study shows as the lack of a consensus on rehabilitation tailored on CMT patients need is perceived by patients and familiar/caregiver.
  
  
  CONCLUSIONS
  The knowledge of patients perception is very important in order to obtain the best rehabilitation program for CMT disease.
authors.affiliation: Neurology, Department of Neuroscience, Don Carlo Gnocchi Onlus Foundation, Milan, Italy - lpadua@rm.unicatt.it.
authors.forename: L
authors.initials: L
authors.lastname: Padua
authors.forename: C
authors.initials: C
authors.lastname: Pazzaglia
authors.forename: A
authors.initials: A
authors.lastname: Schenone
authors.forename: F
authors.initials: F
authors.lastname: Ferraro
authors.forename: A
authors.initials: A
authors.lastname: Biroli
authors.forename: C
authors.initials: C
authors.lastname: Esposito
authors.forename: D
authors.initials: D
authors.lastname: Pareysonv
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D017028:Caregivers; D002607:Charcot-Marie-Tooth Disease / Q000503:physiopathology / Q000534:rehabilitation*; D003430:Cross-Sectional Studies; D005081:Exercise Therapy / Q000379:methods*; D005190:Family; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010045:Outpatients; D011795:Surveys and Questionnaires; D016138:Walking / Q000502:physiology; D055815:Young Adult