FP.25 Contracture management in ambulant boys with Duchenne muscular dystrophy (DMD)

Abstract

Ankle contractures are a common feature in DMD, often developing in young boys as early as 4 or 5 years of age. This can contribute to premature loss of ambulation or at least some degree of impaired motor function. Preserving mobility by preserving ankle range of movement (ROM) can have positive effects on activity and participation as well as health related benefits related to respiratory function, scoliosis, and bone density. Traditional Physiotherapy techniques aim to reduce and prevent contractures occurring at the ankle by daily stretching regimes and night time splints (AFOs). In Newcastle, physiotherapy clinical experience has found issues with compliance with night time AFOs, limiting the benefit of these splints. The use of Contracture Control Devices (CCDs) has been explored as a novel alternative to these. To date there are no studies investigating the efficacy of CCDs or comparing these orthotic devices in contracture management in the DMD population. This pilot study aims to explore feasibility for a larger scale study comparing AFOs and CCDs in ambulant boys with DMD. It will explore intra-rater reliability of ROM and North Star Ambulatory Assessment (NSAA) evaluations and examine patient satisfaction and compliance. In an on-going pilot study, two ambulant boys were recruited to a single centre, single blinded Randomised Controlled Trial comparing standard night time AFO intervention (control arm) with the CCD group. Efficacy measures were ankle ROM and specific items from the NSAA. Intra-rater reliability was calculated using ICC. Patient adherence and satisfaction was measured using a self-completed diary and a validated satisfaction questionnaire, the OPUS. Currently N=2, with one boy randomised into each group. Intra-rater reliability was high for ankle ROM and NSAA items. Compliance was satisfactory for both individuals and the OPUS questionnaire informed patient satisfaction. Recruitment is ongoing, and updated results will be reported.