Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2021 Nov 27;16(1):498.
doi: 10.1186/s13023-021-02129-0.

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

Mareike Fuerboeter #  1 , Johannes Boettcher #  2 , Claus Barkmann  3 , Holger Zapf  3 , Rojin Nazarian  1 , Silke Wiegand-Grefe  3 , Konrad Reinshagen  1 , Michael Boettcher  1   4
Affiliations

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

Mareike Fuerboeter et al. Orphanet J Rare Dis. .

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.

Keywords: Health-related quality of life; Mental health; Parents; Pediatric surgery; Quality of life; Rare diseases.

PubMed Disclaimer

Conflict of interest statement

All authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
CONSORT flow diagram
Fig. 2
Fig. 2
Percentages of parents and children in the index group at risk for psychosocial impairment
See this image and copyright information in PMC

References

    1. Dodge JA, Chigladze T, Donadieu J, et al. The importance of rare diseases: from the gene to society. Arch Dis Child. 2011;96:791–792. - PubMed
    1. Zurynski Y, Frith K, Leonard H, Elliott E. Rare childhood diseases: how should we respond? Arch Dis Child. 2008;93:1071–1074. - PubMed
    1. Wakap SN, Lambert DM, Olry A, Rodwell C, Gueydan C, Lanneau V, Murphy D, le Cam Y, Rath A. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. Eur J Hum Genet. 2020;28:165–173. - PMC - PubMed
    1. Slade A, Isa F, Kyte D, Pankhurst T, Kerecuk L, Ferguson J, Lipkin G, Calvert M. Patient reported outcome measures in rare diseases: a narrative review. Orphanet J Rare Dis. 2018 doi: 10.1186/s13023-018-0810-x. - DOI - PMC - PubMed
    1. Vogt K, Ho K (2020) Rare diseases in the time of covid-19: once forgotten, always forgotten? The BMJ. https://blogs.bmj.com/bmj/2020/09/20/rare-diseases-in-the-time-of-covid-.... Accessed 20 Jan 2021.

Publication types