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Epidemiol Health > Accepted Articles
Epidemiology and Health 2022;e2022014.
DOI: https://doi.org/10.4178/epih.e2022014    [Accepted] Published online Jan 10, 2022.
Development and Validation of Pediatric-Youth Hyperphagia Assessment for Prader-Willi Syndrome
Sung Yoon Cho1  , Danbee Kang2  , Minji Im3  , Aram Yang4  , Min-Sun Kim1  , Jiyeon Kim1  , Eu Seon Noh1  , Eun Kyung Kwon1  , Eu jin Choi1  , Sunju Han1  , Young Ah Park5  , Min Jung Kwak6  , Youngha Kim7  , Juhee Cho2  , Dong-Kyu Jin1 
1Department of Pediatrics, Samsung Medical Center, Sungkyunkwan University School of Medicine, Seoul, Korea
2Center for Clinical Epidemiology, Samsung Medical Center, Sungkyunkwan University School of Medicine, Seoul, Korea
3Department of Pediatrics, Sungae General Hospital, Seoul, Korea
4Department of Pediatrics, Kangbuk Samsung Hospital, Sungkyunkwan University School of Medicine, Seoul, Korea
5College of Nursing Science, Kyung Hee University, Seoul, Korea
6Department of Pediatrics, Pusan National University Hospital, Pusan National University School of Medicine , Busan, Korea
7Center for Clinical Epidemiology, Samsung Medical Center, Sungkyunkwan University School of Medicine, Seoul, Korea
Correspondence  Juhee Cho ,Tel: 02-3410-1448, Email: jcho@skku.edu
Dong-Kyu Jin ,Tel: 02-3410-1448, Email: jcho@skku.edu
Received: Nov 19, 2021  Accepted after revision: Jan 10, 2022
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 aims to develop and validate the Pediatric-Youth Hyperphagia Assessment tool for children and adolescents with PWS.
Method:
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.
Results:
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).
Conclusions:
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.
Keywords: Prader–Willi syndrome; Hyperphagia; Appetite; Questionnaire; Eating disorder; Obesity


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