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Updated: Jul 3, 2025
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Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy
Published on: January 12, 2019
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Pilot study of a virtual weight management program for Duchenne muscular dystrophy
Natassja Billich1,2,3, Paula Bray4,5, Helen Truby3,6
1Department of Nutrition, Dietetics and Food, School of Clinical Sciences at Monash Health, Faculty of Medicine, Nursing and Health Sciences, Monash University, Melbourne, Australia.
Muscle & Nerve
|February 14, 2024
Summary
A co-designed telehealth weight management program was feasible and acceptable for young people with Duchenne muscular dystrophy (DMD). Further research is recommended to test an adapted hybrid program for efficacy.
Area of Science:
- Pediatric Health
- Neuromuscular Disorders
- Obesity Management
Background:
- Young individuals with Duchenne muscular dystrophy (DMD) face a heightened risk of obesity.
- Effective weight management is crucial for families, yet significant barriers hinder its implementation.
- Pilot studies are essential to explore innovative approaches for this population.
Purpose of the Study:
- To assess the feasibility and acceptability of a co-designed weight management program for DMD.
- To gather insights from caregivers on program structure and content.
- To lay the groundwork for future efficacy trials.
Main Methods:
- The Supporting Nutrition and Optimizing Wellbeing Program (SNOW-P) involved weekly telehealth/phone sessions over six weeks.
- Caregivers of boys with DMD provided input on the program's design via an online survey.
- Primary outcomes focused on feasibility and acceptability, with secondary outcomes including weight, physical function, and quality of life.
Main Results:
- Eight participants (median age 11.4 years) enrolled, with seven completing the program; high attendance (88%-100%) and satisfaction were reported.
- Weight z-scores showed minimal change at six weeks, indicating expected weight gain patterns.
- Caregiver-reported outcome completion rates were low, and waist circumference measurements lacked accuracy.
Conclusions:
- A co-designed, telehealth/phone-based weight management program demonstrated feasibility and acceptability in a small cohort of boys with DMD.
- An adapted hybrid program, combining telehealth and in-person elements, is recommended for future efficacy testing.
- Addressing barriers and refining outcome measures are key for optimizing interventions.
