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

Mareike Fuerboeter,Rojin Nazarian,Silke Wiegand-Grefe,Michael Boettcher,Claus Barkmann,Konrad Reinshagen,Johannes Boettcher,Holger Zapf

doi:10.1186/s13023-021-02129-0

Abstract

BackgroundCOVID-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.MethodsA 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.ResultsMothers 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.ConclusionParents 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.

Highlights

COVID-19 has affected our society at large, vulnerable groups, such as children suffer‐ ing from rare diseases and their parents
Subgroup analyses revealed that no significant difference occurred in any health-related quality of life (HRQoL), quality of life (QoL), and mental health subscale between the different disease groups and whether there was a partial lockdown taking place
The analyses revealed that younger age was associated with fewer parent-reported psychosocial problems on HRQoL of mothers and fathers and mental health of mothers

Summary

Introduction

COVID-19 has affected our society at large, vulnerable groups, such as children suffer‐ ing from rare diseases and their parents. 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. One population struggling with the burden of a rare disease are children and adolescents with pediatric conditions requiring surgical treatment, namely anorectal malformations, biliary atresia, congenital diaphragmatic hernia, esophageal atresia, or Hirschsprung’s disease. These conditions are either (1) congenital structural anomalies that are present at birth or (2) arise in early childhood and require surgical treatment within the first days or months of life [9]. Many conditions can be treated with a single surgery, but others might require multiple surgeries and result in long-term illness and life-long afflictions as well as chronic disability [9,10,11]

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Conclusion