ArticleHealth and quality of life outcomes2020
Influence of schooling on the health-related quality of life of children with rare diseases.
Article in Health and quality of life outcomes, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
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
21 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Towards development of treat to target (T2T) in childhood-onset systemic lupus erythematosus: PReS-endorsed overarching principles and points-to-consider from an international task force.Annals of the rheumatic 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
- Securing Educational Support for Children With Rare Genetic Conditions: Mothers' Experiences and Impacts on the Family.Journal of intellectual disability research : JIDR · 2026Article
- The rare disease tree: adolescent voices, family narratives, and health professionals' views in Greece.European journal of pediatrics · 2026Article
- Inborn errors of immunity at school: How can we do better?Journal of human immunity · 2026Article
- Quality of life among children and young adults with rare diseases. A parental perspective.European journal of pediatrics · 2025Article
- PACOPED QL: Development and evaluation of the quality-of-life scale for children with life-threatening illnesses.Palliative & supportive care · 2025Article
- The adolescent experience of hereditary angioedema: a qualitative study of disease burden and treatment experience.Orphanet journal of rare diseases · 2025Article
- The impact of rare diseases on the quality of life in paediatric patients: current status.Frontiers in public health · 2025Review
- Growing Up with Haemophilia: Quality of Life and School Functioning of a Group of Mexican Adolescents.Continuity in education · 2025Article
- Parental Intervention Program for Preschool children with Rare Diseases - a mixed methods evaluation of parents' experiences and utility.Orphanet journal of rare diseases · 2023Article
- Schooling experiences in children with long-gap esophageal atresia compared with children with esophageal atresia and primary anastomosis: a Swedish study.Orphanet journal of rare diseases · 2023Article
- The KIDSCREEN-27 Quality of Life Measure for Romanian Children Aged 6: Reliability and Validity of the Romanian Version.Healthcare (Basel, Switzerland) · 2022Article
- Psychosocial Considerations for the Child with Rare Disease: A Review with Recommendations and Calls to Action.Children (Basel, Switzerland) · 2022Review
- Consequences of rare diagnoses for education and daily life: development of an observation instrument.Orphanet journal of rare diseases · 2022Article
- 'I Wish the School Had a Better Understanding of the Diagnosis': parent perspectives on educational needs of students with sex chromosome aneuploidies.Journal of research in special educational needs : JORSEN · 2022Article
- mEDUrare: Supporting Integrated Care for Rare Diseases by Better Connecting Health and Education Through Policy.The Yale journal of biology and medicine · 2021Review
- Are rare diseases overlooked by medical education? Awareness of rare diseases among physicians in Poland: an explanatory study.Orphanet journal of rare diseases · 2021Article
- Psychometric analysis of the Brazilian-version Kidscreen-27 questionnaire.Health and quality of life outcomes · 2021Observational
- Left to themselves: Time to target chronic pain in childhood rare diseases.Neuroscience and biobehavioral reviews · 2021Review
Corrections and comments
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Authors and funding
4 authors.
Funding
Abstract
backgroundAlthough participation of children with rare diseases in school is considered beneficial, it poses new challenges for the educational system, but also for the affected children and their families. The aim of this study is to identify which aspects of the schooling experience may have an impact on the health-related quality of life of children with rare diseases.
methodA qualitative study was conducted using the social-critical paradigm as theoretical perspective. Participants (n = 28) included children with rare diseases (n = 8), parents (n = 12) and school staff (n = 8). Data was obtained through in-depth interviews and focus groups and analysed through discourse analysis as methodological orientation.
resultsParticipants' discourses placed value on the social benefits of inclusion of children with rare diseases in schooling. Discourses also highlighted how the low numbers of children with rare diseases and the delay, or lack, of a clear diagnosis are among the difficulties experienced in the pursuit of the adaptations that children and teachers need to promote a healthy and normalized school experience. The issues identified in their health-related quality of life were summarized in seven categories: Attendance, Knowledge, Participation, Acceptance, Discrimination, Safety, Health-Related Support.
conclusionChildren with rare diseases remain, in many cases, invisible at the educational level due to the low numbers of children affected, limiting the kind of resources available to the child and teaching staff. This situation requires inter-disciplinary and inter-sector measures between health services and educational environments to articulate a comprehensive approach focused on children's clinical needs.
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