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World J Pediatr. 2019 Oct;15(5):506-510. doi: 10.1007/s12519-019-00311-w. Epub 2019 Sep 13.

Quality of life in caregivers of young children with Prader-Willi syndrome.

Author information

1
Department of Pediatrics, Affiliated Hangzhou First People's Hospital, Zhejiang University School of Medicine, Hangzhou, China.
2
Department of Endocrinology, Children's Hospital, Zhejiang University School of Medicine, 3333 Binsheng Road, Hangzhou, 310052, China. zcc14@zju.edu.cn.

Abstract

BACKGROUND:

This study aimed to measure quality of life (QOL) in primary caregivers of young childrenwith Prader-Willi syndrome (PWS).

METHODS:

The caregivers of 32 children aged from 6.1 to 71.2 months completed the Chinese version of the World Health Organization Quality of Life-BREF (WHOQOL-BREF). We also evaluated the social adaption capacity of these children with Infants-Junior Middle School Students' Social-Life Abilities Scale. Correlation test was used to explore the related factors to caregivers' QOL.

RESULTS:

Caregivers of young children with PWS had significantly lower QOL. The correlation analyses revealed that caregivers' QOL was lower in children with young age, combined diseases or symptoms or poor social adaption, or caregivers having concerns about the child.

CONCLUSIONS:

Rearing a chilld with PWS may lead to decreased QOL. Psychological status of caregivers should be highlighted and social support should be given to families with PWS children.

KEYWORDS:

Caregiver Prader–Willi syndrome (PWS); Quality of life (QOL); Social adaption; WHOQOL-BREF

PMID:
31520366
DOI:
10.1007/s12519-019-00311-w

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