359 - Connecting Caregivers: Baseline Data from a Randomized Controlled Trial to Evaluate Virtual Peer-Support for Family Caregivers of Individuals with Neuromuscular Disease

Poster Number: 359
Publication Number: 359.2955

Background: Neuromuscular diseases (NMDs) are a diverse group of rare genetic disorders that affect the skeletal muscles, lower motor neurons, neuromuscular junctions, or the nerves controlling muscle function. Longstanding functional deficits result in the need for support with activities of daily living resulting in significant caregiver burden by family members. Peer support has been shown to improve health-related quality of life (HRQoL) and decrease stress in family caregivers (FCs). Currently, a program does not exist to support FCs of individuals with NMD nationally.

Objective: Our primary objective was to evaluate the effect of a virtual peer support intervention on caregiver mastery of FCs of children and adults with NMD. Our secondary objective was to evaluate the effect of the intervention on FCs competency, burden, stress, anxiety, and depression.

Design/Methods: A randomized controlled trial was performed to evaluate the virtual peer support program. Study participants were FCs of individuals with NMD across Canada. Participants completed surveys at baseline, 12, and 24 weeks. Participants in the intervention arm were assigned peer mentors based on either being an adult or pediatric caregiver and the use of long-term ventilation by the patient. Participants communicated synchronously using a digitally secure communication platform (aTouchAway App) over a 12-week period and engaged in weekly virtual discussion sessions on a range of caregiving-related topics. This clinical trial was registered with clinicaltrials.gov: NCT05070624 and received institutional ethics approval: CTO-3590.

Results: The study consisted of 100 randomized FCs, (50 in each arm), and 12 peer mentors. Caregivers had a mean age of 46.5 years, 81% were female, and 70% were mothers. The patients had a mean age of 22.2 years, were diagnosed with Muscular Dystrophy (47%), and Spinal Muscular Atrophy (17%), and used non-invasive ventilation (63%). Mentors had a mean age of 43.8, 10% were female, and 66.6% were mothers. At baseline, caregiver mastery scores, caregiver competency scores, caregiver burden, and caregiver mental health were not different.

Conclusion(s): This study will provide clinically relevant data on a rigorously developed and stakeholder-informed, innovative virtual peer support program for FCs of individuals with NMD. Based on the results, Muscular Dystrophy Canada will launch a virtual peer support program nationwide to provide a formal platform for caregivers to connect with each other developing a community of support in hopes of easing FC burden and isolation.