Development and Validation of Pediatric-Youth Hyperphagia Assessment for Prader-Willi Syndrome

• Published in: Epidemiology and health 2022, 44(0), , pp.1-8
• Main Authors: Cho, Sung Yoon, Kang, Danbee, Im, Minji, Yang, Aram, Kim, Min-Sun, Kim, Jiyeon, Noh, Eu Seon, Kwon, Eun Kyung, Choi, Eu Jin, Han, Sunju, Park, Young Ah, Kwak, Min Jung, Kim, Youngha, Cho, Juhee, Jin, Dong-Kyu
• Format: Article
• Language: English
• Subjects: appetite; eating disorder; hyperphagia; Methods; obesity; prader-willi syndrome; questionnaire; 예방의학
• ISSN: 2092-7193; 2092-7193
• DOI: 10.4178/epih.e2022014

Hyperphagia is a highly stressful, life-threatening feature of Prader-Willi Syndrome (PWS). It is important to assess this complex behavior accurately over time. This study aims to develop and validate the Pediatric-Youth Hyperphagia Assessment tool for children and adolescents with PWS. After the extensive literature review and qualitative interviews, the final version of the Pediatric-Youth Hyperphagia Assessment for PWS (PYHAP) with 14 questions in three domains [verbal (5), behavior (4), and social (5)] was developed and tested at Samsung Medical Center in Seoul, Korea from July 2018 and September 2019. Exploratory and confirmatory factor analysis (CFA) were performed to confirm construct validity. The correlation between the PYHAP and the Korean Children's Eating Behavior Questionnaire (K-CEBQ) were calculated to evaluate the convergent and discriminant validity. Criterion validity and validity of the response categories were also tested. Cronbach's alpha coefficient of the PYHAP was 0.92. The fit indices for CFA were good (CFI = 0.87; SRMR = 0.08). Domains of the PYHAP were highly correlated with relevant domains of the K-CEBQ. The accuracy of the PYHAP score to predict uncontrolled hyperphagia was good (AUC = 0.75, 95% CI = 0.65, 0.85). The PYHAP was a reliable and valid tool to evaluate hyperphagia in children and adolescents with PWS via the caregivers' assessments. It is recommended to use the PYHAP as a tool to communicate with parents or caregivers about hyperphagia of the patients or to monitor and manage extreme behaviors of children with PWS.