388P Remote evaluation of functional outcomes in Duchenne muscular dystrophy: navigating opportunities and obstacles

• Published in: Neuromuscular disorders : NMD 2024-10, Vol.43, p.104441, Article 104441.116
• Main Authors: Shyamprasad, S. Banavara, Khandekar, G., Babu, R. Ramesh, Krishna, G., Mathew, A.
• Format: Article
• Language: English
• ISSN: 0960-8966
• DOI: 10.1016/j.nmd.2024.07.125

Glucocorticoids (GC) are a key part of the management of Duchenne Muscular Dystrophy (DMD) and are enshrined in the Standards of Care (SOC). Assessments of motor ability using functional outcome measures (FOM) are a part of these SOC recommendations. They work synergistically and help clinicians optimize management, particularly in the adjustment of steroid dosage, thus minimising side-effects and improving overall quality of life in individuals with DMD. It can be challenging to co-ordinate these assessments along with clinical monitoring as they are available only in specialised neuromuscular centres. Hence geography becomes a barrier which limits access to clinical care. Here we explore our experience with online functional assessments as part of SOC in the ongoing care of individuals with DMD who were geographically distant from our centre in Southern India. We designed a process to carry out remote assessments in which we included these FOMs: North Star Ambulatory Assessment (NSAA); the Six-minute walk distance (6MWD); Time to rise (TT rise), Gowers’ rise time, 10-metre walk/run and Motor Function Measure (MFM) both MFM20 and MFM 32. The process involved: 1. Pre-assessment orientation for parents and the subject: a) The parents were asked to identify the assessment area and get it approved by the assessing therapist; b) They were briefed on how the videos had to be recorded; c) A list of items were given that needed to be kept ready for the assessment 2. Assessments were carried out via recorded video viewing and live video call by trained neuromuscular physiotherapists 3. Provision of physiotherapy and rehabilitation advice, and 4. Review by neuromuscular specialists. In our opinion, these were the benefits: a) Facilitates periodic review and guidance of physiotherapeutic interventions b) It significantly reduced the burden of travel and associated expenses c) Enhanced patient compliance and continuity of follow-up care d) Enabled early identification of deformities and their timely intervention e) Allowed assessment in a familiar environment, potentially optimizing the child's motor performance without fatigue f) Facilitated the prompt identification and prioritization of emergent health concerns. On the other hand, these were the limitations: a) Possibility of missing subtle deformities, which precluded the prescription of orthosis consequently b) Presented challenges in assessing children with behavioural issues c) Reduced accuracy due to the abse