SAT-199 - Pilot Evaluation of A Specialized Summer Camp Intervention for Children with Prader-Willi Syndrome

Background Prader-Willi syndrome (PWS) is a rare neurodevelopmental disorder characterized by hyperphagia, obesity, hypotonia, anxiety, behavioral rigidity and substantial caregiver burden. Access to structured, multidisciplinary support outside clinical settings is limited. Camp-based interventions may address psychosocial and behavioral contributors to long-term metabolic risk, but supporting data are scarce.
Objective To compare baseline physical, behavioral, and psychosocial characteristics of children with PWS who self-selected to attend a specialized summer camp versus controls and to evaluate short-term effects of camp participation on psychosocial functioning, food-related behaviors, physical activity, and caregiver burden.
Methods Children and adolescents with PWS aged 6–16 years and their caregivers were enrolled in camp and control groups. Seven participants self-selected into a 2-day multidisciplinary camp emphasizing structured physical activity, food safety education, social skills development and caregiver support. Eight controls completed assessments at matched time points without camp participation. Validated parent-proxy questionnaires were administered at baseline and 3-month follow-up to assess hyperphagia, anxiety, depression, emotional regulation, peer relationships, physical activity, food-related distress, sleepiness, caregiver burden, and healthcare utilization. Anthropometric and metabolic data were collected when available.
Results At baseline, campers demonstrated greater clinical and psychosocial complexity than controls, reflecting real-world self-selection of families with higher support needs. Camp participants had higher prevalence of obesity, greater food-related supervision requirements, more severe hyperphagia, elevated anxiety and behavioral rigidity, and higher caregiver burden, while baseline peer relationship scores were comparable between groups. At 3 months, caregivers of camp participants reported consistent directional improvements in anxiety-related behaviors, peer relationships, and food-related distress, along with reductions in caregiver burden. Physical activity improved modestly, and anthropometric and metabolic measures remained stable. Although the pilot study was not powered for formal hypothesis testing, the consistency and directionality of changes across multiple domains support potential benefit.
Conclusion Self-selection into the camp identified families with greater baseline clinical and psychosocial burden. Despite higher baseline risk, participants demonstrated sustained improvements across multiple psychosocial and caregiver-reported domains. These findings support specialized camp-based interventions as a family-centered strategy to improve quality of life in PWS and to target resources toward families with the greatest unmet need.

*Unless otherwise noted, all abstracts presented at ENDO must not be released to the press or the public until the date and time of presentation. For oral presentations, the abstracts are embargoed until the session begins. The Endocrine Society reserves the right to lift the embargo on specific abstracts that are selected for promotion prior to or during ENDO.*