Dokkyo Medical Journal
Online ISSN : 2436-522X
Print ISSN : 2436-5211
Original
The Improvement of QOL of Caregivers of Patients with Prader-Willi Syndrome after Growth Hormone Therapy
Erina NakaneHiroyuki OgataSouhei SaimaChuuichi KondoMasao GitoSayuki KobayashiYuji OtoNobuyuki MurakamiToshihiro NagaiHiroshi Ihara
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JOURNAL OPEN ACCESS

2024 Volume 3 Issue 4 Pages 264-271

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Abstract

Prader-Willi syndrome is a rare neurodevelopmental disorder that is characterized by neonatal hypotonia, hypogonadism, hyperphagia, and cognitive impairment. We compared the quality of life of caregivers of patients with Prader-Willi syndrome before and after the patients received growth hormone therapy.

Caregivers' quality of life was assessed using the Japanese version of the World Health Organization Quality of Life 26 (WHO-QOL26). We examined the impacts of two genotypes of Prader-Willi syndrome (deletion and maternal uniparental disomy) and growth hormone therapy on caregivers' quality of life. Using paired t-tests, we compared the caregivers' quality of life scores before and after the patients with Prader-Willi syndrome received growth hormone therapy.

The study included 141 individuals with Prader-Willi syndrome (68 males and 73 females) definitively identified with the deletion genotype and 35 (13 males and 22 females) who exhibited maternal uniparental disomy on chromosome 15. Our findings revealed that the caregivers' quality of life scores of the individuals with Prader-Willi syndrome-deletion before and after growth hormone therapy differed significantly. On the contrary, a statistically significant difference was not noted in all domains of quality of life scores of the caregivers of patients with Prader-Willi syndrome-maternal uniparental disomy on chromosome 15 genotype before and after growth hormone therapy.

The results of this study highlight that the caregivers of individuals with Prader Willi syndrome, particularly those with the Prader-Willi syndrome-deletion genotype receiving growth hormone therapy, had improved quality of life across multiple domains, including physical health, psychological well-being, social connections, and environmental experience.

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© 2024 Dokkyo Medical Society

This article is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (https://creativecommons.org/licenses/by-nc-nd/4.0/).
https://creativecommons.org/licenses/by-nc-nd/4.0/
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