Mobile arm supports in Duchenne muscular dystrophy: a pilot study of user experience and outcomes

PURPOSE: This pilot study examined whether two different types of non-powered mobile arm supports (MAS) enhanced upper limb function and independence with activities of daily living (ADLs) in people with Duchenne muscular dystrophy (DMD). METHOD: A mixed methods cross-sectional design was used. Participants were four males with DMD, aged 16 to 20 years (M = 18.25 years). Two participants were current MAS users, and two had previously used MAS. To explore experiences of MAS use, semi-structured interviews were undertaken, then transcribed verbatim and analysed thematically. To measure the impact of MAS on arm function and ADLs, participants using MAS completed the Performance of the Upper Limb (PUL) and the DMD Upper Limb Patient Reported Outcome Measure with and without MAS. Participants no longer using MAS only completed the PUL without MAS. RESULTS: MAS enhanced upper limb function and independence with ADLs in three of four participants. Eating and drinking was most often positively impacted by MAS. Access to informal support for MAS set-up, and ongoing input from a clinician or assistive technology (AT) supplier with MAS expertise, were important enablers to successful MAS use. Barriers to use included inadequate upper limb strength, interference of MAS with wheelchair controls, and AT funding delays. CONCLUSION: MAS should be considered by individuals with DMD and clinicians working with them as the disease progresses and strength declines. Potential barriers to MAS use need to be addressed to ensure maximum utility. AT funding delays must also be minimized to avoid impact on outcomes of people with DMD.Implications for RehabilitationIndividuals with DMD, and clinicians working with them, may consider MAS to aid achievement of functional goals as the disease progresses and upper limb function declines.Both objective and subjective outcome measures should be used when evaluating the effectiveness of MAS.Consideration should be given to the potential interference of MAS with wheelchair controls and the availability of informal or paid supports (e.g., family, support workers, teachers) to aid MAS use.Efficient and timely funding of MAS is required, as delays may negatively impact outcomes for people with progressive neurological conditions, such as DMD