Perception of ankle foot orthoses by individuals with Charcot-Marie-Tooth disease

Many individuals with Charcot-Marie-Tooth disease (CMT) use ankle foot orthoses (AFOs) to address balance and functional deficits.

This study was conducted to further understand how individuals with CMT perceive the effects of AFO use on function.

Cross-sectional online survey.

Individuals with CMT provided free text responses to 3 questions: (Q1) What would you change about your orthosis if you could? (Q2) What activities does your ankle foot orthosis improve? (Q3) What activities does your ankle foot orthosis limit? Two independent reviewers evaluated responses and used an inductive approach to identify primary themes. Percent agreement between reviewers was calculated for each primary theme.

A total of 310 individuals participated, and 5 primary themes were identified for each question. Q1 primary themes included ease of use or functionality, compatibility with shoes, durability, appearance, and comfort or fit. Q2 primary themes included walking, standing, balance and stability, physical health, and activities of daily life. Q3 primary themes were related to shoes or clothing, balance or inclines, mobility, long-term use, and general activities. Average percent agreement between reviewers was 63% (17%).

Study results align with previously reported data collected using patient-reported outcome surveys. In addition, participants highlighted concerns that are not usually addressed in orthosis-related questionnaires. These data emphasize areas of improvement for orthotic treatment relevant to individuals with CMT and which may help guide future research aiming to improve functional outcomes and compliance with orthotic interventions.