ArticleAmerican journal of medical genetics. Part A2019
Factors affecting quality of life in children and adolescents with hypermobile Ehlers-Danlos syndrome/hypermobility spectrum disorders.
Article in American journal of medical genetics. Part A, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04133272 (Registry of Ehlers-Danlos Syndrome That Collects Clinical, Functional, Genetic, Genealogical, Imaging, Surgical, Treatment, Quality of Life Data. Data Are Linked to Patients' Biological Samples, When Available), which is not on this map. Cited by 29 papers, 3 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
Registry of Ehlers-Danlos Syndrome That Collects Clinical, Functional, Genetic, Genealogical, Imaging, Surgical, Treatment, Quality of Life Data. Data Are Linked to Patients' Biological Samples, When Available
Who cites it
29 citing papers in PubMed, 3 syntheses or guidelines pooled it, 69 citations in OpenAlex.
- Meta-Analysis: Chronic Gastrointestinal Symptoms and Comorbidities in Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders.Alimentary pharmacology & therapeutics · 2026Pooled it
- Hypermobility prevalence, measurements, and outcomes in childhood, adolescence, and emerging adulthood: a systematic review.Rheumatology international · 2023Pooled it
- Outcome measures for assessing change over time in studies of symptomatic children with hypermobility: a systematic review.BMC pediatrics · 2021Pooled it
- Article
- Lower Limb Biomechanical Observations in Hypermobile Children: An Exploratory Case-Control Study.International journal of environmental research and public health · 2025Article
- Exploring physical activity patterns in adolescents with hypermobility spectrum disorder or hypermobile Ehlers-Danlos Syndrome.Pediatric rheumatology online journal · 2025Observational
- Outcome measures for assessing change in children with hypermobility-associated conditions and chronic lower limb musculoskeletal pain: a Delphi survey of international health professions.Clinical rheumatology · 2025Review
- Article
- The Relationship Between Fatigue, Pain Interference, Pain-Related Distress, and Avoidance in Pediatric Hypermobile Ehlers-Danlos Syndrome.Children (Basel, Switzerland) · 2025Article
- Exploring signs of central sensitization in adolescents with hypermobility Spectrum disorder or hypermobile Ehlers-Danlos syndrome.European journal of pain (London, England) · 2025Article
- Assessing the Utility of a Patient-Facing Diagnostic Tool Among Individuals With Hypermobile Ehlers-Danlos Syndrome: Focus Group Study.JMIR formative research · 2024Article
- Estimates of the excess cost burden of Ehlers-Danlos syndromes: a United States MarketScan® claims database analysis.Frontiers in public health · 2024Article
- Liquid and solid gastric emptying and correlation with clinical characteristics in pediatric patients with dyspepsia.Neurogastroenterology and motility · 2024Article
- Placing joint hypermobility in context: traits, disorders and syndromes.British medical bulletin · 2023Article
- The Impact of Podiatric Intervention on the Quality of Life and Pain in Children and Adolescents with Hypermobility.International journal of environmental research and public health · 2023Article
- Central sensitization in adolescents with hypermobility spectrum disorder or hypermobile Ehlers-Danlos syndrome-a feasibility study.Pilot and feasibility studies · 2023Article
- Child Abuse, Misdiagnosed by an Expertise Center: Part I-Medico-Social Aspects.Children (Basel, Switzerland) · 2023Article
- Pediatric joint hypermobility: a diagnostic framework and narrative review.Orphanet journal of rare diseases · 2023Review
- Validation of an Electronic Visual Analog Scale App for Pain Evaluation in Children and Adolescents With Symptomatic Hypermobility: Cross-sectional Study.JMIR pediatrics and parenting · 2022Article
- Discovering domains important to health-related quality of life in differentiated thyroid cancer.American journal of surgery · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors at 2 institutions in 2 countries.
Funding
Abstract
Hypermobile Ehlers-Danlos syndrome (hEDS) is a hereditary disorder of connective tissue, often presenting with complex symptoms can include chronic pain, fatigue, and dysautonomia. Factors influencing functional disability in the pediatric hEDS population are incompletely studied. This study's aims were to assess factors that affect quality of life in children and adolescents with hEDS. Individuals with hEDS between the ages 12-20 years and matched parents were recruited through retrospective chart review at two genetics clinics. Participants completed a questionnaire that included the Pediatric Quality of Life Inventory (PedsQL™), PedsQL Multidimentional Fatigue Scale, Functional Disability Inventory, Pain-Frequency-Severity-Duration Scale, the Brief Illness Perception Questionnaire, measures of anxiety and depression, and helpful interventions. Survey responses were completed for 47 children and adolescents with hEDS/hypermobility spectrum disorder (81% female, mean age 16 years), some by the affected individual, some by their parent, and some by both. Clinical data derived from chart review were compared statistically to survey responses. All outcomes correlated moderately to strongly with each other. Using multiple regression, general fatigue and pain scores were the best predictors of the PedsQL total score. Additionally, presence of any psychiatric diagnosis was correlated with a lower PedsQL score. Current management guidelines recommend early intervention to prevent disability from deconditioning; these results may help identify target interventions in this vulnerable population.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.