Pilot study of a virtual weight management program for Duchenne muscular dystrophy

Abstract

Introduction/AimsYoung people with Duchenne muscular dystrophy (DMD) are at increased risk of obesity. Weight management is important to families; however, several barriers exist. This pilot study aimed to investigate the feasibility and acceptability of a co‐designed weight management program for DMD.MethodsThe Supporting Nutrition and Optimizing Wellbeing Program (SNOW‐P) was a single‐arm diet and behavior weight management intervention delivered via weekly telehealth/phone visits over 6 weeks to young people with DMD and obesity (body mass index (BMI) ≥95th percentile) and their caregivers. Using an online survey, caregivers of boys with DMD were consulted on the structure and topics delivered in SNOW‐P. Primary outcomes were feasibility and acceptability; secondary outcomes were weight, physical function, and quality of life at 6‐ and 12‐weeks follow‐up.ResultsOf nineteen eligible participants, eight were enrolled (median age 11.4 years, range 4.9–15.8), and seven completed the program. Visit attendance was high (88%–100%); most participants reported high satisfaction and that participation was easy. Suggested changes included online and visual DMD‐specific resources. At 6‐weeks, median change in weight z‐scores was −0.01 (IQR: −0.23, 0.17) indicating that on average, weight gain tracked as expected for age. Waist circumference measured by caregivers lacked accuracy and the completion rate of caregiver‐reported secondary outcome measures (e.g., food diaries) was low.DiscussionA co‐designed, telehealth/phone weight management program appeared to be feasible and acceptable in a small group of boys with DMD. An adapted, hybrid telehealth and face‐to‐face program is recommended for efficacy testing.