Health-Related Quality of Life of Children and Adolescents With Congenital Hyperinsulinism – A Scoping Review

IntroductionDespite improvements in diagnosis and therapeutic advances in treatment, congenital hyperinsulinism (CHI) remains a severe disease with high patient impairment. We aimed to review the literature on Health-related Quality of Life in children and adolescents with congenital hyperinsulinism...

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Autores principales:	Kaja Kristensen, Julia Quitmann, Stefanie Witt
Formato:	article
Lenguaje:	EN
Publicado:	Frontiers Media S.A. 2021
Materias:	Health-related quality of life congenital hyperinsulinism children adolescents patient-reported outcomes Diseases of the endocrine glands. Clinical endocrinology RC648-665
Acceso en línea:	https://doaj.org/article/98ca76334b064645bbd0aa56e93e02cb
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spelling	oai:doaj.org-article:98ca76334b064645bbd0aa56e93e02cb2021-12-03T11:18:50ZHealth-Related Quality of Life of Children and Adolescents With Congenital Hyperinsulinism – A Scoping Review1664-239210.3389/fendo.2021.784932https://doaj.org/article/98ca76334b064645bbd0aa56e93e02cb2021-12-01T00:00:00Zhttps://www.frontiersin.org/articles/10.3389/fendo.2021.784932/fullhttps://doaj.org/toc/1664-2392IntroductionDespite improvements in diagnosis and therapeutic advances in treatment, congenital hyperinsulinism (CHI) remains a severe disease with high patient impairment. We aimed to review the literature on Health-related Quality of Life in children and adolescents with congenital hyperinsulinism and summarize the findings.Materials and MethodsFor this scoping review, a literature search was conducted in PubMed and Web of Science in May 2021. Inclusion and exclusion criteria for the selection of articles were defined a priori.ResultsTwo hundred and forty-five (245) articles were identified through the search and screened on the basis of title and abstract. The full texts of forty articles were then assessed. Finally, four articles (published 2012-2020) describing Health-related Quality of Life in children and adolescents with congenital hyperinsulinism were included. The study designs were heterogeneous and included cross-sectional observational studies (n=2), clinical trials (n =1), and case reports (n=1) with different sample sizes. Three studies were conducted in European countries and one in Japan. The results for Health-related Quality of Life revealed inconsistencies.ConclusionThere are only a few studies looking at Health-related Quality of Life in children and adolescents with congenital hyperinsulinism. To gain a comprehensive understanding of the impact of congenital hyperinsulinism on Health-related Quality of Life in children and adolescents, it is necessary to use both generic and condition-specific instruments to measure Health-related Quality of Life of young patients in larger samples, to collect longitudinal data, and to consider qualitative research approaches.Kaja KristensenJulia QuitmannStefanie WittFrontiers Media S.A.articleHealth-related quality of lifecongenital hyperinsulinismchildrenadolescentspatient-reported outcomesDiseases of the endocrine glands. Clinical endocrinologyRC648-665ENFrontiers in Endocrinology, Vol 12 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Health-related quality of life congenital hyperinsulinism children adolescents patient-reported outcomes Diseases of the endocrine glands. Clinical endocrinology RC648-665
spellingShingle	Health-related quality of life congenital hyperinsulinism children adolescents patient-reported outcomes Diseases of the endocrine glands. Clinical endocrinology RC648-665 Kaja Kristensen Julia Quitmann Stefanie Witt Health-Related Quality of Life of Children and Adolescents With Congenital Hyperinsulinism – A Scoping Review
description	IntroductionDespite improvements in diagnosis and therapeutic advances in treatment, congenital hyperinsulinism (CHI) remains a severe disease with high patient impairment. We aimed to review the literature on Health-related Quality of Life in children and adolescents with congenital hyperinsulinism and summarize the findings.Materials and MethodsFor this scoping review, a literature search was conducted in PubMed and Web of Science in May 2021. Inclusion and exclusion criteria for the selection of articles were defined a priori.ResultsTwo hundred and forty-five (245) articles were identified through the search and screened on the basis of title and abstract. The full texts of forty articles were then assessed. Finally, four articles (published 2012-2020) describing Health-related Quality of Life in children and adolescents with congenital hyperinsulinism were included. The study designs were heterogeneous and included cross-sectional observational studies (n=2), clinical trials (n =1), and case reports (n=1) with different sample sizes. Three studies were conducted in European countries and one in Japan. The results for Health-related Quality of Life revealed inconsistencies.ConclusionThere are only a few studies looking at Health-related Quality of Life in children and adolescents with congenital hyperinsulinism. To gain a comprehensive understanding of the impact of congenital hyperinsulinism on Health-related Quality of Life in children and adolescents, it is necessary to use both generic and condition-specific instruments to measure Health-related Quality of Life of young patients in larger samples, to collect longitudinal data, and to consider qualitative research approaches.
format	article
author	Kaja Kristensen Julia Quitmann Stefanie Witt
author_facet	Kaja Kristensen Julia Quitmann Stefanie Witt
author_sort	Kaja Kristensen
title	Health-Related Quality of Life of Children and Adolescents With Congenital Hyperinsulinism – A Scoping Review
title_short	Health-Related Quality of Life of Children and Adolescents With Congenital Hyperinsulinism – A Scoping Review
title_full	Health-Related Quality of Life of Children and Adolescents With Congenital Hyperinsulinism – A Scoping Review
title_fullStr	Health-Related Quality of Life of Children and Adolescents With Congenital Hyperinsulinism – A Scoping Review
title_full_unstemmed	Health-Related Quality of Life of Children and Adolescents With Congenital Hyperinsulinism – A Scoping Review
title_sort	health-related quality of life of children and adolescents with congenital hyperinsulinism – a scoping review
publisher	Frontiers Media S.A.
publishDate	2021
url	https://doaj.org/article/98ca76334b064645bbd0aa56e93e02cb
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Health-Related Quality of Life of Children and Adolescents With Congenital Hyperinsulinism – A Scoping Review

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