Quality of life in caregivers of young children with Prader–Willi syndrome
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This study aimed to measure quality of life (QOL) in primary caregivers of young childrenwith Prader–Willi syndrome (PWS).
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.
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.
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.
KeywordsCaregiver Prader–Willi syndrome (PWS) Quality of life (QOL) Social adaption WHOQOL-BREF
SM and CZ are the principle investigators of this manuscript. JS and FX conducted the data collection and analysis. This manuscript was drafted by SM, and critically revised by CZ. All authors have approved submission of the manuscript.
This work was partly supported by National Natural Science Foundation of China (81371215&81670786), Zhejiang Provincial Program for the Cultivation of High-Level Innovative Health Talents, and Medical Health Science and Technology Project of Health Commission of Zhejiang Province (No. 2019RC239).
Compliance with ethical standards
Consent was obtained from the parent and the study was proved by the Ethical Committee of the Children Hospital of Zhejiang University School of Medicine.
Conflict of interest
No financial or nonfinancial benefits have been received or will be received from any party related directly or indirectly to the subject of this article.
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