ArticleOrphanet journal of rare diseases2021
Quality of life and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic.
Article in Orphanet journal of rare diseases, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 1 of them a synthesis that pooled it.
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Who cites it
20 citing papers in PubMed, 1 synthesis or guideline pooled it, 34 citations in OpenAlex.
- Assessing Psychological Harms on Parents and Primary Caregivers of Children Living with a Rare Disease: A Systematic Review of the Scope and Validity of Surveys Utilized.Clinical child and family psychology review · 2025Pooled it
- Trial
- Advance Care Planning for Children With Rare Diseases: A Pilot RCT.Pediatrics · 2024Trial
- Challenging behaviors across COVID-19 in young children with rare neurogenetic conditions: A seven-year, cross-syndrome analysis.Child development · 2026Article
- Prevalence of depressive and anxiety symptoms among patients consulting a rare disease outpatient clinic for rare and undiagnosed diseases in China.Orphanet journal of rare diseases · 2026Article
- Levels and correlates of pandemic anxiety in people living with rare diseases: a cross-sectional analysis using a structural equation model.Orphanet journal of rare diseases · 2026Article
- Health-related quality of life in 205 children with arthrogryposis multiplex congenita.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Health-Related Quality of Life and Mental Health of Parents of Children with Pediatric Abdominal Tumors.Children (Basel, Switzerland) · 2024Article
- Quality of Life of Children with Short Bowel Syndrome from Patients' and Parents' Points of View.Children (Basel, Switzerland) · 2024Article
- A Narrative Review of Patient-Reported Outcome Measures and Their Application in Recent Pediatric Surgical Research: Advancing Knowledge and Offering New Perspectives to the Field.European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie · 2024Review
- Anxiety among children a year after the onset of the COVID-19 pandemic: a Brazilian cross-sectional online survey.Frontiers in public health · 2024Article
- [Consequences of a pandemic for people living with rare diseases and recommendations for maintaining healthcare and participation].Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz · 2024Article
- Health-Related Quality of Life and Mental Health of Children with Embryonal Abdominal Tumors.Children (Basel, Switzerland) · 2023Article
- Parent-Reported Child and Parent Quality of Life during COVID-19 Testing at an Australian Paediatric Hospital Outpatient Clinic: A Cross-Sectional Study.Healthcare (Basel, Switzerland) · 2023Article
- Living with a rare disease - experiences and needs in pediatric patients and their parents.Orphanet journal of rare diseases · 2023Article
- Barriers to and Facilitators of Providing Care for Adolescents Suffering from Rare Diseases: A Mixed Systematic Review.Pediatric reports · 2023Review
- The psychosocial situation of families caring for children with rare diseases during the COVID-19 pandemic: results of a cross-sectional online survey.Orphanet journal of rare diseases · 2022Article
- Article
- Postoperative morbidity and health-related quality of life in children with delayed reconstruction of esophageal atresia: a nationwide Swedish study.Orphanet journal of rare diseases · 2022Article
- Rare disease emerging as a global public health priority.Frontiers in public health · 2022Review
Corrections and comments
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Authors and funding
8 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
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.
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