Quality of life and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic

Abstract Background COVID-19 has affected our society at large, particularly vulnerable groups, such as children suffering from rare diseases and their parents. However, the psychosocial influences of COVID-19 on these have yet to be investigated. As such, the study’s goal was to evaluate the health...

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Autores principales:	Mareike Fuerboeter, Johannes Boettcher, Claus Barkmann, Holger Zapf, Rojin Nazarian, Silke Wiegand-Grefe, Konrad Reinshagen, Michael Boettcher
Formato:	article
Lenguaje:	EN
Publicado:	BMC 2021
Materias:	Quality of life Health-related quality of life Mental health Rare diseases Parents Pediatric surgery Medicine R
Acceso en línea:	https://doaj.org/article/96c0590b58f64df7a0a156862245e8d6
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spelling	oai:doaj.org-article:96c0590b58f64df7a0a156862245e8d62021-11-28T12:22:38ZQuality of life and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic10.1186/s13023-021-02129-01750-1172https://doaj.org/article/96c0590b58f64df7a0a156862245e8d62021-11-01T00:00:00Zhttps://doi.org/10.1186/s13023-021-02129-0https://doaj.org/toc/1750-1172Abstract Background COVID-19 has affected our society at large, particularly vulnerable groups, such as children suffering from rare diseases and their parents. However, the psychosocial influences of COVID-19 on these have yet to be investigated. As such, the study’s goal was to evaluate the health-related quality of life (HRQoL), quality of life (QoL), and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic and lockdown measures. Methods A survey of n = 210 parents of children with rare congenital surgical diseases and a control group of n = 88 parents of children without rare diseases was conducted cross-sectionally between April 2020 to April 2021. Data on HRQoL, QoL, and mental health was collected using standardized psychometric questionnaires for children and parents presenting to the pediatric surgery department at a university hospital. Results Mothers of children with rare pediatric surgical diseases showed significantly lower QoL and significantly higher impairment in mental health than a control group and norm data. For fathers, this was solely the case for their QoL. Children’s parent-reported HRQoL and mental health were partially impaired. Social and disease-specific risk factors of the respective outcomes in affected families were identified through regression analysis models. Conclusion Parents of children with rare diseases report severe psychosocial impairment regarding themselves and their children during the COVID-19 pandemic. Therefore, affected families should receive attention and supportive care in the form of a family-center approach to alleviate the additional burden of the COVID-19 pandemic.Mareike FuerboeterJohannes BoettcherClaus BarkmannHolger ZapfRojin NazarianSilke Wiegand-GrefeKonrad ReinshagenMichael BoettcherBMCarticleQuality of lifeHealth-related quality of lifeMental healthRare diseasesParentsPediatric surgeryMedicineRENOrphanet Journal of Rare Diseases, Vol 16, Iss 1, Pp 1-12 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Quality of life Health-related quality of life Mental health Rare diseases Parents Pediatric surgery Medicine R
spellingShingle	Quality of life Health-related quality of life Mental health Rare diseases Parents Pediatric surgery Medicine R Mareike Fuerboeter Johannes Boettcher Claus Barkmann Holger Zapf Rojin Nazarian Silke Wiegand-Grefe Konrad Reinshagen Michael Boettcher Quality of life and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic
description	Abstract Background COVID-19 has affected our society at large, particularly vulnerable groups, such as children suffering from rare diseases and their parents. However, the psychosocial influences of COVID-19 on these have yet to be investigated. As such, the study’s goal was to evaluate the health-related quality of life (HRQoL), quality of life (QoL), and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic and lockdown measures. Methods A survey of n = 210 parents of children with rare congenital surgical diseases and a control group of n = 88 parents of children without rare diseases was conducted cross-sectionally between April 2020 to April 2021. Data on HRQoL, QoL, and mental health was collected using standardized psychometric questionnaires for children and parents presenting to the pediatric surgery department at a university hospital. Results Mothers of children with rare pediatric surgical diseases showed significantly lower QoL and significantly higher impairment in mental health than a control group and norm data. For fathers, this was solely the case for their QoL. Children’s parent-reported HRQoL and mental health were partially impaired. Social and disease-specific risk factors of the respective outcomes in affected families were identified through regression analysis models. Conclusion Parents of children with rare diseases report severe psychosocial impairment regarding themselves and their children during the COVID-19 pandemic. Therefore, affected families should receive attention and supportive care in the form of a family-center approach to alleviate the additional burden of the COVID-19 pandemic.
format	article
author	Mareike Fuerboeter Johannes Boettcher Claus Barkmann Holger Zapf Rojin Nazarian Silke Wiegand-Grefe Konrad Reinshagen Michael Boettcher
author_facet	Mareike Fuerboeter Johannes Boettcher Claus Barkmann Holger Zapf Rojin Nazarian Silke Wiegand-Grefe Konrad Reinshagen Michael Boettcher
author_sort	Mareike Fuerboeter
title	Quality of life and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic
title_short	Quality of life and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic
title_full	Quality of life and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic
title_fullStr	Quality of life and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic
title_full_unstemmed	Quality of life and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic
title_sort	quality of life and mental health of children with rare congenital surgical diseases and their parents during the covid-19 pandemic
publisher	BMC
publishDate	2021
url	https://doaj.org/article/96c0590b58f64df7a0a156862245e8d6
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Quality of life and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic

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