ArticlePediatric rheumatology online journal2014
Health related quality of life and parental perceptions of child vulnerability among parents of a child with juvenile idiopathic arthritis: results from a web-based survey.
Article in Pediatric rheumatology online journal, 2014. 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, 36 citations in OpenAlex.
- Being the Pillar for Children with Rare Diseases-A Systematic Review on Parental Quality of Life.International journal of environmental research and public health · 2021Pooled it
- Perceived Child Vulnerability and Protective Behavior by Parents of Children with Chronic Kidney Disease.Maternal and child health journal · 2026Article
- Emotional-behavioral difficulties and maternal psychosocial factors in preschool children with food allergy: a cross-sectional case-control study.European journal of pediatrics · 2026Article
- Mental health needs of children and young people with arthritis.Arthritis research & therapy · 2026Review
- Capability wellbeing of parents caring for children with rare diseases: a national cross-sectional study.BMC public health · 2025Article
- Autoinflammatory periodic fever syndromes in preschoolers: neurodevelopmental, behavioral, and maternal psychosocial outcomes.European journal of pediatrics · 2025Article
- A closer look into maternal psychological distress and the associated factors: the case of autism and chronic conditions.Frontiers in psychiatry · 2025Article
- Facing Pediatric Rheumatic Diseases: The Role of Disease Activity and Parental Emotion Regulation Strategy in Parents' and Children's Psychological Adjustment.Children (Basel, Switzerland) · 2023Article
- Well-being in chronic pediatric inflammatory rheumatic diseases: the experience of a French healthcare network.Orphanet journal of rare diseases · 2023Article
- Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature.Health and quality of life outcomes · 2021Review
- Depression And Anxiety In Patients With Juvenile Idiopathic Arthritis: Current Insights And Impact On Quality Of Life, A Systematic Review.Open access rheumatology : research and reviews · 2019Review
- Quality of life among parents seeking treatment for their child's functional abdominal pain.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2018Article
- Parental Perceptions of Child Vulnerability in Families of Youth With Spina Bifida: the Role of Parental Distress and Parenting Stress.Journal of pediatric psychology · 2018Article
- Predicting parent health-related quality of life: evaluating conceptual models.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2017Article
- Health-related quality of life among Swedish children with Juvenile Idiopathic Arthritis: parent-child discrepancies, gender differences and comparison with a European cohort.Pediatric rheumatology online journal · 2017Article
- Article
- Socioeconomic costs and health-related quality of life in juvenile idiopathic arthritis: a cost-of-illness study in the United Kingdom.BMC musculoskeletal disorders · 2016Article
- Health-related quality of life and mental health in parents of children with hemolytic uremic syndrome.Pediatric nephrology (Berlin, Germany) · 2016Observational
- Why we need a process on breaking news of Juvenile Idiopathic Arthritis: a mixed methods study.Pediatric rheumatology online journal · 2016Article
- [Survey of pain after ambulatory surgery: An internet-based instrument].Schmerz (Berlin, Germany) · 2016Article
Corrections and comments
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Authors and funding
6 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundA chronic illness, such as Juvenile Idiopathic Arthritis (JIA), has an impact on the whole family, especially on parents caring for the ill child. Therefore the aim of this study is to evaluate parental Health Related Quality of Life (HRQOL) and parental perceptions of child vulnerability (PPCV) and associated variables in parents of a child with JIA.
methodsParents of all JIA patients (0-18 years) in Amsterdam, the Netherlands, were eligible. HRQOL was measured using the TNO-AZL Questionnaire (TAAQOL) and PPCV using the Child Vulnerability Scale (CVS). The HRQOL of parents of a child with JIA was compared to a norm population, and differences between parents of a child with JIA and active arthritis versus parents of a child with JIA without active arthritis were analyzed (ANOVA). For PPCV, parents of a child with JIA were compared to a norm population, including healthy and chronically ill children (Chi(2), Mann-Whitney U test). Variables associated with PPCV were identified by logistic regression analyses.
results155 parents (87.5% mothers) completed online questionnaires. JIA parents showed worse HRQOL than parents of healthy children on one out of twelve domains: fine motor HRQOL (p < .001). Parents of children with active arthritis showed worse HRQOL regarding daily activities (p < .05), cognitive functioning (p < .01) and depressive emotions (p < .05) compared to parents of children without active arthritis. Parents of children with JIA perceived their child as more vulnerable than parents of a healthy child (p < .001) and parents of a chronically ill child (p < .001). Parents of children with active arthritis reported higher levels of PPCV (p < .05) than parents of children without active arthritis. A higher degree of functional disability (p < .01) and shorter disease duration (p < .05) were associated with higher levels of PPCV.
conclusionThe HRQOL of JIA parents was comparable to the HRQOL of parents of a healthy child. JIA parents of a child with active arthritis showed worse HRQOL than parents of a child without active arthritis. Parents perceived their child with JIA as vulnerable.
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