Abstract
BACKGROUND AND AIMS: Impaired balance and functional deficits are common in individuals with Charcot-Marie-Tooth disease (CMT). Many individuals with CMT use ankle foot orthoses (AFOs) to improve their balance and function. The aim of this study was to evaluate the fall frequency, perceived effect of AFOs on balance, and balance confidence of individuals with CMT who currently use AFOs. METHODS: Three hundred and six individuals participated in this study. Questions related to fall frequency, questions about the perceived effect of AFOs on balance, and the Activities Specific Balance Confidence Scale were distributed to individuals with CMT via e-mail using a Patient Contact Registry. RESULTS: Many participants reported falling in the preceding 24 h (14% of participants) or week (38% of participants). 78% of participants indicated their AFOs improve their balance. Participants reported decreased balance confidence across a range of activities, with highest confidence for level ground walking and standing tasks (> 60%), markedly decreased confidence when walking on stairs, slopes, or with external stimuli (40-55%), and poor confidence when walking on icy sidewalks, when bumped, or on unsteady surfaces (< 40%). CONCLUSIONS: The data presented here provides insight into the frequency of falls and balance confidence for individuals with CMT who use AFOs. The Activities Specific Balance Confidence Scale can be used as an assessment tool to identify CMT patients with low balance confidence who are at risk for falls. This information can be used to target patient education and tailor treatment plans and interventions to address challenging activities. Further, this study will help to focus future studies investigating the effects of AFO design on balance confidence and falls.