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Minji Im 1 Article
Development and validation of the Pediatric-Youth Hyperphagia Assessment for Prader-Willi syndrome
Sung Yoon Cho, Danbee Kang, Minji Im, Aram Yang, Min-Sun Kim, Jiyeon Kim, Eu-Seon Noh, Eun Kyung Kwon, Eujin Choi, Sunju Han, Young Ah Park, Min Jung Kwak, Youngha Kim, Juhee Cho, Dong-Kyu Jin
Epidemiol Health. 2022;44:e2022014.   Published online January 10, 2022
DOI: https://doi.org/10.4178/epih.e2022014
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AbstractAbstract AbstractSummary PDF
Abstract
OBJECTIVES
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 aimed to develop and validate the Pediatric-Youth Hyperphagia Assessment for Prader-Willi syndrome (PYHAP) as a tool targeting children and adolescents.
METHODS
After an extensive literature review and qualitative interviews, the final version of the PYHAP with 14 questions in 3 domains (verbal [5], behavior [4], and social [5]) was developed and tested at Samsung Medical Center in Seoul, Korea from July 2018 to September 2019. Exploratory factor analysis and confirmatory factor analysis (CFA) were performed to confirm construct validity. The correlations between the PYHAP and the Korean Children’s Eating Behavior Questionnaire (K-CEBQ) were calculated to evaluate convergent and discriminant validity. Criterion validity and the validity of the response categories were also tested.
RESULTS
Cronbach’s alpha coefficient of the PYHAP was 0.91. The fit indices for CFA were good (comparative fit index, 0.87; standardized root mean squared residual, 0.08). The domains of the PYHAP were closely correlated with the relevant domains of the K-CEBQ. The accuracy of the PYHAP score for predicting uncontrolled hyperphagia was good (area under the curve, 0.75; 95% confidence interval, 0.65 to 0.85).
CONCLUSIONS
The PYHAP was confirmed to be a reliable and valid tool to evaluate hyperphagia in children and adolescents with PWS via caregivers’ assessments. It is recommended to use the PYHAP to communicate with parents or caregivers about patients’ hyperphagia or to monitor and manage extreme behaviors in children with PWS.
Summary
Korean summary
프래더 윌리 증후군에서 '조절되지 않는 식욕'은 환자의 수명과 삶의 질에 매우 중요한 문제로, 최근 식욕 억제제 개발을 위한 연구가 활발히 이뤄지고 있으나 약제의 유효성을 객관적으로 평가하는 도구는 부족한 상황입니다. 본 연구는 주부양자를 통하여 평가가 가능한 프래더윌리 증후군 소아청소년 환자들의 식욕심각도 평가도구를 개발하였고, 그것의 신뢰성과 타당성을 입증하였습니다.
Key Message
Pediatric-Youth Hyperphagia Assessment for Prader-Willi syndrome (PYHAP) is a reliable and valid tool to evaluate hyperphagia in children and adolescents with PWS via caregivers’ assessments.

Epidemiol Health : Epidemiology and Health