Weight Outcomes During and After A Family-accompanied Residential Program for Prader-Willi syndrome: A Cohort Study in China

Abstract Background Weight management is a lifelong challenge for individuals with Prader-Willi syndrome (PWS) and their families. Structured residential settings may facilitate dietary control through scheduled meals, restricted food access, and regular weight monitoring. However, evidence from family-accompanied residential programs remains limited, particularly in China, and little is known about post-discharge weight outcomes. We retrospectively analyzed records from PWS Home, a family-accompanied nonprofit program run by the China PWS Patient Association and our clinical unit, between August 2018 and August 2026. Eligible completed stays with valid admission and discharge weights were included. Percentage body-weight change was evaluated using a linear mixed-effects model accounting for repeated stays. Caregiver follow-up assessed post-discharge weight status and management practices. Separate generalized estimating equation logistic models, adjusted for age at follow-up and follow-up duration, explored associations between family and social management practices and weight regain. Results A total of 110 individuals contributed 121 eligible completed stays. Body weight decreased during all stays. Median residential duration was 35 days, and median percentage body-weight change was − 12.3%. The model-estimated mean change was − 13.75% (95% confidence interval [CI], -15.17% to -12.34%), with similar estimates in sensitivity analyses. Caregiver follow-up covered 59 post-discharge episodes from 57 participants. Weight regain was reported in 35 episodes (59.3%); the remaining 24 (40.7%) showed continued weight loss or weight maintenance. Full maintenance of a fixed meal structure (adjusted odds ratio, 0.08; 95% CI, 0.01–0.44) and regular body-weight monitoring (0.21; 0.05–0.95) were associated with lower odds of regain, whereas school or work management difficulties were associated with higher odds (8.76; 1.95–39.29). Associations for fixed meal structure and school or work difficulties persisted in sensitivity analyses. Conclusions Our findings illustrate the challenge of transferring weight-control practices from a structured setting to everyday family and social environments. Continuity of meal routines and coordination of food management across home, school, and work settings warrant further investigation as components of longer-term support for individuals with PWS.