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QOL in caregivers of Japanese patients with Prader–Willi syndrome with reference to age and genotype

This study aimed to measure quality of life (QOL) of the primary family caregivers for patients with Prader–Willi syndrome (PWS). Comparisons were made between caregivers' QOL in regard to their dependents' genotype and age group. The participants with PWS consisted of 22 children (aged fr...

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Autores principales: Ihara, Hiroshi, Ogata, Hiroyuki, Sayama, Masayuki, Kato, Aya, Gito, Masao, Murakami, Nobuyuki, Kido, Yasuhiro, Nagai, Toshiro
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BlackWell Publishing Ltd 2014
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4278419/
https://www.ncbi.nlm.nih.gov/pubmed/24953026
http://dx.doi.org/10.1002/ajmg.a.36634
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author Ihara, Hiroshi
Ogata, Hiroyuki
Sayama, Masayuki
Kato, Aya
Gito, Masao
Murakami, Nobuyuki
Kido, Yasuhiro
Nagai, Toshiro
author_facet Ihara, Hiroshi
Ogata, Hiroyuki
Sayama, Masayuki
Kato, Aya
Gito, Masao
Murakami, Nobuyuki
Kido, Yasuhiro
Nagai, Toshiro
author_sort Ihara, Hiroshi
collection PubMed
description This study aimed to measure quality of life (QOL) of the primary family caregivers for patients with Prader–Willi syndrome (PWS). Comparisons were made between caregivers' QOL in regard to their dependents' genotype and age group. The participants with PWS consisted of 22 children (aged from 6 to 12 years) and 23 adolescents (aged from 13 to 19 years), including 6 children and 7 adolescents with maternal uniparental disomy (mUPD) and 16 children and 16 adolescents with deletion (DEL). The QOL of the primary family caregiver for each patient was assessed using the Japanese version of the WHOQOL-BREF. To examine the effect that age (children vs. adolescents) and genotype (DEL vs. mUPD) have on the QOL of caregivers, a two-way ANOVA was conducted, followed by the Bonferroni procedure to test the simple main effects. The two age groups and the two genotypes of PWS were used as independent variables and the total QOL of caregivers as a dependent variable. The two-way ANOVA (F(1, 41) = 6.98, P < 0.05), followed by the Bonferroni procedure, showed the following: the total QOL of caregivers of DEL adolescents showed little difference from that with DEL children, but the QOL of caregivers for mUPD adolescents was shown to be lower than that with mUPD children along with that of caregivers with DEL adolescents. There is hence a growing tendency for the deterioration in the QOL of caregivers to manifest itself later in the patients' adolescence, found mainly with mUPD patients. © 2014 The Authors. American Journal of Medical Genetics Published by Wiley Periodicals, Inc.
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spelling pubmed-42784192014-12-31 QOL in caregivers of Japanese patients with Prader–Willi syndrome with reference to age and genotype Ihara, Hiroshi Ogata, Hiroyuki Sayama, Masayuki Kato, Aya Gito, Masao Murakami, Nobuyuki Kido, Yasuhiro Nagai, Toshiro Am J Med Genet A Research Articles This study aimed to measure quality of life (QOL) of the primary family caregivers for patients with Prader–Willi syndrome (PWS). Comparisons were made between caregivers' QOL in regard to their dependents' genotype and age group. The participants with PWS consisted of 22 children (aged from 6 to 12 years) and 23 adolescents (aged from 13 to 19 years), including 6 children and 7 adolescents with maternal uniparental disomy (mUPD) and 16 children and 16 adolescents with deletion (DEL). The QOL of the primary family caregiver for each patient was assessed using the Japanese version of the WHOQOL-BREF. To examine the effect that age (children vs. adolescents) and genotype (DEL vs. mUPD) have on the QOL of caregivers, a two-way ANOVA was conducted, followed by the Bonferroni procedure to test the simple main effects. The two age groups and the two genotypes of PWS were used as independent variables and the total QOL of caregivers as a dependent variable. The two-way ANOVA (F(1, 41) = 6.98, P < 0.05), followed by the Bonferroni procedure, showed the following: the total QOL of caregivers of DEL adolescents showed little difference from that with DEL children, but the QOL of caregivers for mUPD adolescents was shown to be lower than that with mUPD children along with that of caregivers with DEL adolescents. There is hence a growing tendency for the deterioration in the QOL of caregivers to manifest itself later in the patients' adolescence, found mainly with mUPD patients. © 2014 The Authors. American Journal of Medical Genetics Published by Wiley Periodicals, Inc. BlackWell Publishing Ltd 2014-09 2014-06-20 /pmc/articles/PMC4278419/ /pubmed/24953026 http://dx.doi.org/10.1002/ajmg.a.36634 Text en © 2014 The Authors. American Journal of Medical Genetics Part A Published by Wiley Periodicals, Inc. http://creativecommons.org/licenses/by-nc-nd/3.0/ This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.
spellingShingle Research Articles
Ihara, Hiroshi
Ogata, Hiroyuki
Sayama, Masayuki
Kato, Aya
Gito, Masao
Murakami, Nobuyuki
Kido, Yasuhiro
Nagai, Toshiro
QOL in caregivers of Japanese patients with Prader–Willi syndrome with reference to age and genotype
title QOL in caregivers of Japanese patients with Prader–Willi syndrome with reference to age and genotype
title_full QOL in caregivers of Japanese patients with Prader–Willi syndrome with reference to age and genotype
title_fullStr QOL in caregivers of Japanese patients with Prader–Willi syndrome with reference to age and genotype
title_full_unstemmed QOL in caregivers of Japanese patients with Prader–Willi syndrome with reference to age and genotype
title_short QOL in caregivers of Japanese patients with Prader–Willi syndrome with reference to age and genotype
title_sort qol in caregivers of japanese patients with prader–willi syndrome with reference to age and genotype
topic Research Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4278419/
https://www.ncbi.nlm.nih.gov/pubmed/24953026
http://dx.doi.org/10.1002/ajmg.a.36634
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