Physical Activity in Children with Prader-Willi Syndrome

A Parents’ Perspective

Abstract

Background. Physical activity (PA) is vital for the management of weight among those with Prader Willi Syndrome (PWS). However, little is known about characteristics of PA in individuals with PWS. Objective/Hypothesis. To assess from the parent’s perspective, PA levels among individuals with PWS, their preferences for specific activities, and perceived benefits, barriers, and resources needed to participate in PA. Methods. Participants were 90 parents and caregivers of a child with PWS, predominantly in California. Survey questions included their child’s participation in different PAs, perceived benefits and barriers to enrolling their child in a PA program, and perceived needs to facilitate their child being physically active. Results. Walking was the predominant PA, representing 66% of the activity time across all age groups. Children 10-17 years old engaged in more moderate intensity PA per week than children 5-10 years old. Children 5-10 years old engaged in more vigorous PA than those 18+ years old. Parents reported that they would be encouraged to enroll their child in a PA program if it would improve their children’s motor skills and balance (78.2%) as well as stamina and strength (74.4%). Time commitment and travel were most common barriers. Less financial constraints (70.1%) and having more time (54.7%) were listed as needs. Conclusions. Similar to individuals without PWS, vigorous PA declines with age. It is recommended that caregivers and health care providers emphasize the role of vigorous and bone-strengthening PA as children with PWS approach adolescence.