ArticleHealth and quality of life outcomes2013
Health-related quality of life for children with rare diagnoses, their parents' satisfaction with life and the association between the two.
Article in Health and quality of life outcomes, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 28 papers, 2 of them syntheses that pooled it.
What it found
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
28 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Quality of life of pediatric and adult individuals with osteogenesis imperfecta: a meta-analysis.Orphanet journal of rare diseases · 2023Pooled it
- Perception of Social and Educational Quality of Life of Minors Diagnosed with Rare Diseases: A Systematic Review and Meta-Analysis.International journal of environmental research and public health · 2023Pooled it
- Transferability of an executive function intervention in children with cerebral palsy: A randomized controlled trial.Developmental medicine and child neurology · 2025Trial
- Health-Related Quality of Life and Family Impact in Young Children with Infantile Epileptic Spasms Syndrome: A Cross-Sectional Caregiver-Reported Study.Journal of clinical medicine · 2026Article
- The rare disease tree: adolescent voices, family narratives, and health professionals' views in Greece.European journal of pediatrics · 2026Article
- Critical Functional Domains in Pediatric Onset TUBB4A-Related Leukodystrophy: A Clinical and Caregiver's Perspective.Pediatric neurology · 2025Article
- Health-related quality of life in syndromic scoliosis treated by segmental pedicle screw instrumentation: a case-control study.Acta orthopaedica · 2025Article
- Development and initial validation of the health-related quality of life pictorial inventory for children (HEALTH-PIC).Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Experiences and Hope in Caregivers of Children With Aicardi Goutières Syndrome.Journal of child neurology · 2025Article
- Rare disease, common struggles: quality of life, caregiver burden and financial wellbeing of family caregivers in Poland.Scientific reports · 2025Article
- Predictors of life satisfaction in fathers of children with cerebral palsy.Revista paulista de pediatria : orgao oficial da Sociedade de Pediatria de Sao Paulo · 2025Article
- Optimising Health-Related Quality of Life in Children With Osteogenesis Imperfecta.Calcified tissue international · 2024Review
- Perceptions of Parents/Caregivers About the Impact of Oral Conditions on the Quality of Life of Children and Adolescents with Autism Spectrum Disorder.Journal of autism and developmental disorders · 2024Article
- Article
- Health-related quality of life in children and adolescents with Marfan syndrome or related disorders: a controlled cross-sectional study.Orphanet journal of rare diseases · 2024Article
- Pictures versus words: can we use a pictorial scale to measure child health-related quality of life?Frontiers in public health · 2024Review
- Barriers to and Facilitators of Providing Care for Adolescents Suffering from Rare Diseases: A Mixed Systematic Review.Pediatric reports · 2023Review
- Health-Related Quality of Life and Family Functioning of Primary Caregivers of Children with Menkes Disease.Journal of clinical medicine · 2023Article
- Discussing psychological and psychotherapeutic support for patients with Marfan syndrome (MFS) and their family: an example of a structured program in Italy.Frontiers in psychology · 2023Article
- 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
Corrections and comments
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeTo examine children's health-related quality of life and parents' satisfaction with life and explore the association between the two in families where a child has a rare disorder.
methodsWe used a cross-sectional study design. A questionnaire was sent to parents of 439 school children (6-18 years) with congenital rare disorders. Children's health-related quality of life (HRQOL) was examined by Pediatric Quality of Life InventoryTM 4.0 (PedsQL) Norwegian version. Satisfaction with life was examined by Satisfaction with Life Scale (SWLS).
resultsThe response rate was 48% (n = 209). The average age of the children was 12 years and 50% were girls. The parents scored their children with reduced physical, emotional, social and school functioning. The reductions were greatest in the physical area. Parents scored average to high on SWLS but significantly lower than the general Norwegian population. There was a positive association between parental SWLS and the children's social functioning and school functioning.
conclusionChildren with congenital, rare disorders often require assistance from many parts of the public service system. Caring for their physical needs should not conflict with their educational and social needs. It is important that the children's school-life is organized so that the diagnosis does not interfere with the children's education and social life more than necessary.
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