Ankle foot orthoses for people with Charcot Marie Tooth disease – views of users and orthotists on important aspects of use

Abstract

Purpose. To explore important aspects of the benefits, important characteristics, barriers to use and disadvantages of using ankle foot orthoses (AFOs) as seen by people with Charcot Marie Tooth disease (CMT) and the orthotists who will fit and supply them.

Method. This qualitative study used the nominal group technique and individual semi-structured interviews, according to participant preference and ability to travel. Propositions were put to 15 participants (eight females) with CMT regarding benefits, disadvantages, barriers to use and important characteristics of ankle foot orthoses AFOs and regarding benefits and disadvantages to seven orthotists. Priorities in these areas were ranked and a thematic analysis of the free text was made separately by two observers and a joint decision made of final themes.

Results. Fifteen people (eight females) with CMT and seven orthotists participated. Users' themes concerned functional mobility walking, pain/discomfort, choice of AFOs and associated footwear, custom made design, use in practical situations and support for foot and ankle. They noted that AFOs improved walking, but practical aspects of use and provision, as well as consideration of cosmetic aspects, were frequently problematic. Orthotists had similar themes, but with a difference in emphasis, that included prevention of future complications, education regarding device limitations and craftsmanship as a further theme.

Conclusions. Users understood the potential benefits of AFOs and could identify disadvantages which might be remedied, but were frustrated by the difficulties in translating this into practice. Further refinement of current orthoses and delivery of orthotic services may assist in addressing these issues.

Keywords:

• Hereditary sensory and motor neuropathy
• orthotic devices
• qualitative research

Acknowledgments

The authors thank Mrs. Maxine Clift who gave advice and information regarding the use of the nominal group technique, Mr Barney White, orthotist, who encouraged the initial development of the project and to the people with CMT who contributed to the study.

Declaration of interest: This project was funded from a grant from Ipsen pharmaceuticals. Information from it contributed to a presentation at the CMT UK support group annual conference by Dr M. Phillips in 2010. No remuneration was received for that presentation.