Department of Pediatric Surgery, University Medical Center Hamburg-Eppendorf, Martinistrasse 52, 20246, Hamburg, Germany.
Department of Child and Adolescent Psychiatry, Psychosomatics and Psychotherapy, University Medical Center Hamburg-Eppendorf, Martinistrasse 52, 20246, Hamburg, Germany.
Orphanet J Rare Dis. 2021 Nov 27;16(1):498. doi: 10.1186/s13023-021-02129-0.
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.
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.
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.
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.
COVID-19 对整个社会产生了影响，特别是儿童等弱势群体，例如患有罕见疾病的儿童及其父母。然而，COVID-19 对他们的心理社会影响尚未得到调查。因此，本研究的目的是评估 COVID-19 大流行和封锁措施期间患有罕见先天性外科疾病的儿童及其父母的健康相关生活质量（HRQoL）、生活质量（QoL）和心理健康。
在 2020 年 4 月至 2021 年 4 月期间，对 210 名患有罕见先天性外科疾病的儿童的父母和 88 名患有非罕见疾病的儿童的父母进行了横断面调查。使用标准化心理计量学问卷收集儿童和父母的 HRQoL、QoL 和心理健康数据，这些问卷是在大学医院的小儿外科部门就诊时提供的。
患有罕见儿科外科疾病的儿童的母亲的 QoL 明显低于对照组和常模数据，并且心理健康受损程度明显更高。对于父亲来说，这种情况仅与他们的 QoL 有关。儿童的父母报告的 HRQoL 和心理健康部分受损。通过回归分析模型确定了受影响家庭中各自结果的社会和疾病特异性风险因素。
COVID-19 大流行期间，患有罕见疾病的儿童的父母自我报告和他们的孩子存在严重的心理社会障碍。因此，应通过以家庭为中心的方法为受影响的家庭提供关注和支持性护理，以减轻 COVID-19 大流行带来的额外负担。
