Digital Peer Support Intervention for Family Caregivers of Individuals With Neuromuscular Disease: Randomized Controlled Trial

Clinical Snapshot

Key Findings

• P Value: Not explicitly reported in abstract; CI crosses zero indicating non-significance

• Effect Size: Adjusted mean difference 0.67 points on the Pearlin Mastery Scale (intervention vs. usual care)

• Primary Outcome: Caregiver mastery measured by the Pearlin Mastery Scale at 12 weeks: no statistically significant difference between intervention and usual care groups

• Nnt Or Sensitivity: NNT not calculable; null result across all primary and secondary outcomes. Engagement: 62% of intervention participants and 92% of mentors engaged for ≥8 of 12 weeks. Mean mentor messages: 21.3 (SD 33.3); mean participant messages: 17.7 (SD 33.0)

• Confidence Interval: 95% CI -1.7 to 3.1

Clinical Application

The aTouchAway platform is a commercially available Canadian app; comparable digital health platforms exist in Australia. The peer mentor model requires trained volunteer or paid peer mentors with lived NMD caregiving experience. Implementation costs are moderate and scalable. However, the current evidence does not support routine implementation given null efficacy findings and moderate fidelity. Neuromuscular diseases are managed across Australian tertiary centres including children's hospitals and adult neurology services. Muscular Dystrophy Australia and similar organisations provide peer support infrastructure that could underpin a similar model. The NDIS (National Disability Insurance Scheme) funds some carer support services, and digital health interventions align with the Australian Government's National Digital Health Strategy. The TGA would not regulate a peer support app as a medical device under current frameworks. RACGP guidelines emphasise carer wellbeing assessment in chronic disease management, and GPs are well-positioned to refer caregivers to structured support programs. However, given the null findings of this trial, clinicians should not recommend this specific intervention model without further evidence of efficacy. Future Australian trials should consider integration with NDIS carer support pathways and evaluate culturally adapted models for Indigenous and CALD caregiver populations. Family caregivers (predominantly mothers, mean age ~47 years) of children or adults with neuromuscular diseases including conditions such as Duchenne muscular dystrophy, spinal muscular atrophy, and related disorders. Applicable to caregivers with digital access and English language proficiency.

Abstract

BACKGROUND: Neuromuscular diseases (NMD) affect nerves and muscles, resulting in weakness and often profound disability. Family caregivers of individuals with NMD experience significant psychological burden, stress, and reduced well-being. Digital peer support interventions may help to ameliorate these negative impacts. OBJECTIVE: This study evaluated the effect of a 12-week digital peer support intervention compared to usual care on caregiver mastery, competence, stress, burden, anxiety, and depression among family caregivers of individuals with NMD. METHODS: We conducted a parallel-group multicenter randomized controlled superiority trial in Ontario, Canada. Family caregivers of children or adults with NMD were recruited between August 2022 and September 2023 through 7 sites, social media, and national organizations. Participants were randomized 1:1 to a 12-week digital peer support intervention or usual care. The 12-week intervention comprised access to a trained peer mentor, private app-based communication via aTouchAway (Aetonix, Canada), and weekly moderated digital group discussion forums. The primary outcome was caregiver mastery measured using the Pearlin Mastery Scale, adjusted for baseline score. Secondary outcomes included caregiver stress, competence, burden, anxiety, and depression. We calculated adjusted (for baseline score) mean differences using analysis of covariance and generated multivariable linear regression models exploring associations with the intervention and caregiver age, years of caregiving, care recipient medical diagnosis, care recipient ventilation type, adjusting for baseline outcome scores. Intervention fidelity was evaluated through participant engagement metrics. RESULTS: A total of 100 participants were randomized (n=50 intervention and n=50 control). Participants had a mean age of 46.8 (SD 11.6) years, 70% (n=70) were mothers, with a mean length of caregiving of 11.8 (SD 7.6) years. We found no difference in 12-week Pearlin Mastery Scale scores (adjusted mean difference 0.67, 95% CI -1.7 to 3.1). We also found no difference in any of our secondary outcomes. Mentors and participants sent a mean of 21.3 (SD 33.3) and 17.7 (SD 33.0) messages, respectively. Overall, 62% (n=31) of participants and 92% (n=11) of mentors engaged in at least 1 program element for ≥8 of the 12 weeks. CONCLUSIONS: Our 12-week digital peer support program had no effect on caregiver mastery or other caregiving or psychological outcomes among family caregivers of individuals with NMD. This might be partly due to moderate fidelity and variability in participant engagement. Unlike prior caregiver interventions that incorporated structured psychoeducation or self-management training, this intervention evaluated primarily peer support delivered through a digital platform. This study contributes important evidence regarding the feasibility and limitations of scalable digital peer support programs for caregivers of individuals with NMD. These findings highlight the importance of intervention tailoring, participant matching, and sustained engagement. Future research should evaluate longer-duration and more individualized peer support models targeting caregivers earlier in the caregiving trajectory to improve intervention fidelity and ultimately caregiver well-being.

References

1. 1.Mekhuri, S., Munn, J., Buchanan, F., Hammash, N., Ambreen, M., Ahola Kohut, S., Rose, L., & Amin, R. (2026). Digital peer support intervention for family caregivers of individuals with neuromuscular disease: Randomized controlled trial. Journal of Medical Internet Research. https://doi.org/10.2196/86021