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Health-related quality of life and caregiver burden of pediatric patients with inborn errors of metabolism in Japan using EQ-5D-Y, PedsQL, and J-ZBI.

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Title: Health-related quality of life and caregiver burden of pediatric patients with inborn errors of metabolism in Japan using EQ-5D-Y, PedsQL, and J-ZBI.
Authors: Konomura K; Center for Outcomes Research and Economic Evaluation for Health (C2H), National Institute of Public Health, 2-3-6 Minami, Wako-shi, Saitama, 351-0197, Japan. konomura.k.aa@niph.go.jp., Numakura C; Department of Clinical Genomics & Pediatrics, Saitama Medical University, 38 Moro Hongo Moroyama Iruma-Gun, Saitama, 350-0495, Japan.; Department of Pediatrics, Yamagata University School of Medicine, 2-2-2 Iida-nishi, Yamagata-shi, Yamagata, 990-9585, Japan., Nakamura-Utsunomiya A; Department of Pediatrics, Hiroshima University Graduate School of Biomedical and Health Sciences, 1-2-3 Kasumi, Minami-ku, Hiroshima-shi, Hiroshima, 734-8553, Japan., Hoshino E; Division of Policy Evaluation, Department of Health Policy, National Center for Child Health and Development, Research Institute, 2-10-1 Okura, Setagaya-ku, Tokyo, 157-8535, Japan., Tajima G; Division of Neonatal Screening, National Center for Child Health and Development, Research Institute, 2-10-1 Okura, Setagaya-ku, Tokyo, 157-8535, Japan., Kobayashi H; Laboratories Division, Shimane University Hospital, 89-1 Enya-cho, Izumo-shi, Shimane, 693-8501, Japan., Nakamura K; Department of Pediatrics, Graduate School of Medicine Sciences, Kumamoto University, 1-1-1 Honjo, Chuo-ku, Kumamoto-shi, Kumamoto, 860-8556, Japan., Shimozawa N; Division of Genomics Research, Life Science Research Center, Gifu University, 1-1, Yanagido, Gifu-shi, Gifu, 501-1193, Japan.; Department of Pediatrics, Gifu University Graduate School of Medicine, Gifu University, 1-1, Yanagido, Gifu-shi, Gifu, 501-1193, Japan.; Clinical Genetics Center, Gifu University Hospital, 1-1 Yanagido, Gifu-shi, Gifu, 501-1194, Japan., Bo R; Department of Pediatrics, Kobe University Graduate School of Medicine, 7-5-1 Kusunoki-cho, Chuo-ku, Kobe, 650-0017, Japan., Shiroiwa T; Center for Outcomes Research and Economic Evaluation for Health (C2H), National Institute of Public Health, 2-3-6 Minami, Wako-shi, Saitama, 351-0197, Japan., Shigematsu Y; Department of Pediatrics, University of Fukui School of Medical Sciences, Fukui, 910-1193, Japan., Fukuda T; Center for Outcomes Research and Economic Evaluation for Health (C2H), National Institute of Public Health, 2-3-6 Minami, Wako-shi, Saitama, 351-0197, Japan.
Source: Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation [Qual Life Res] 2024 Dec; Vol. 33 (12), pp. 3323-3333. Date of Electronic Publication: 2024 Sep 04.
Publication Type: Journal Article
Journal Info: Publisher: Springer Netherlands Country of Publication: Netherlands NLM ID: 9210257 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1573-2649 (Electronic) Linking ISSN: 09629343 NLM ISO Abbreviation: Qual Life Res Subsets: MEDLINE
Database: MEDLINE Ultimate
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  Data: Health-related quality of life and caregiver burden of pediatric patients with inborn errors of metabolism in Japan using EQ-5D-Y, PedsQL, and J-ZBI.
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  Data: <searchLink fieldCode="AU" term="%22Konomura+K%22">Konomura K</searchLink>; Center for Outcomes Research and Economic Evaluation for Health (C2H), National Institute of Public Health, 2-3-6 Minami, Wako-shi, Saitama, 351-0197, Japan. konomura.k.aa@niph.go.jp.<br /><searchLink fieldCode="AU" term="%22Numakura+C%22">Numakura C</searchLink>; Department of Clinical Genomics & Pediatrics, Saitama Medical University, 38 Moro Hongo Moroyama Iruma-Gun, Saitama, 350-0495, Japan.; Department of Pediatrics, Yamagata University School of Medicine, 2-2-2 Iida-nishi, Yamagata-shi, Yamagata, 990-9585, Japan.<br /><searchLink fieldCode="AU" term="%22Nakamura-Utsunomiya+A%22">Nakamura-Utsunomiya A</searchLink>; Department of Pediatrics, Hiroshima University Graduate School of Biomedical and Health Sciences, 1-2-3 Kasumi, Minami-ku, Hiroshima-shi, Hiroshima, 734-8553, Japan.<br /><searchLink fieldCode="AU" term="%22Hoshino+E%22">Hoshino E</searchLink>; Division of Policy Evaluation, Department of Health Policy, National Center for Child Health and Development, Research Institute, 2-10-1 Okura, Setagaya-ku, Tokyo, 157-8535, Japan.<br /><searchLink fieldCode="AU" term="%22Tajima+G%22">Tajima G</searchLink>; Division of Neonatal Screening, National Center for Child Health and Development, Research Institute, 2-10-1 Okura, Setagaya-ku, Tokyo, 157-8535, Japan.<br /><searchLink fieldCode="AU" term="%22Kobayashi+H%22">Kobayashi H</searchLink>; Laboratories Division, Shimane University Hospital, 89-1 Enya-cho, Izumo-shi, Shimane, 693-8501, Japan.<br /><searchLink fieldCode="AU" term="%22Nakamura+K%22">Nakamura K</searchLink>; Department of Pediatrics, Graduate School of Medicine Sciences, Kumamoto University, 1-1-1 Honjo, Chuo-ku, Kumamoto-shi, Kumamoto, 860-8556, Japan.<br /><searchLink fieldCode="AU" term="%22Shimozawa+N%22">Shimozawa N</searchLink>; Division of Genomics Research, Life Science Research Center, Gifu University, 1-1, Yanagido, Gifu-shi, Gifu, 501-1193, Japan.; Department of Pediatrics, Gifu University Graduate School of Medicine, Gifu University, 1-1, Yanagido, Gifu-shi, Gifu, 501-1193, Japan.; Clinical Genetics Center, Gifu University Hospital, 1-1 Yanagido, Gifu-shi, Gifu, 501-1194, Japan.<br /><searchLink fieldCode="AU" term="%22Bo+R%22">Bo R</searchLink>; Department of Pediatrics, Kobe University Graduate School of Medicine, 7-5-1 Kusunoki-cho, Chuo-ku, Kobe, 650-0017, Japan.<br /><searchLink fieldCode="AU" term="%22Shiroiwa+T%22">Shiroiwa T</searchLink>; Center for Outcomes Research and Economic Evaluation for Health (C2H), National Institute of Public Health, 2-3-6 Minami, Wako-shi, Saitama, 351-0197, Japan.<br /><searchLink fieldCode="AU" term="%22Shigematsu+Y%22">Shigematsu Y</searchLink>; Department of Pediatrics, University of Fukui School of Medical Sciences, Fukui, 910-1193, Japan.<br /><searchLink fieldCode="AU" term="%22Fukuda+T%22">Fukuda T</searchLink>; Center for Outcomes Research and Economic Evaluation for Health (C2H), National Institute of Public Health, 2-3-6 Minami, Wako-shi, Saitama, 351-0197, Japan.
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