Symptom complaints and impact on functioning in youth with hypermobile Ehlers–Danlos syndrome
Abstract
Hypermobile Ehlers-Danlos syndrome (hEDS), a genetic connective tissue disorder, involves several body systems which makes symptom management and functioning difficult. The aim of this study was to understand pediatric hEDS patients' symptoms and primary complaints. Additionally, we examined the cumulative impact of symptoms on physical and psychological functioning. Thirty-four youth with hEDS were recruited from a genetics clinic and reported the hardest thing about having hEDS, their pain, fatigue, physical symptoms, functional disability, anxiety, and depression. Physical symptoms (pain and fatigue) and limitations (keeping up with friends) were reported as the most difficult parts of having hEDS. A higher number of somatic symptoms was the strongest predictor of disability, anxiety, and depression. Physical symptoms are subjectively distressing and significantly related to impairments in physical and psychological functioning. Thus, addressing these varied symptoms in treatment may yield better functioning in youth with hEDS.
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Adolescents with symptomatic GJH aged 12-18 years have a moderate level of anxiety, with 12% scoring above the clinical cutoff for elevated anxiety.
“Adolescents with symptomatic GJH aged 12-18 years had a moderate level of anxiety, with 12% of the patients scoring above the clinical cutoff59 for elevated anxiety.55”
From Role of Anxiety in Individuals with Generalized Joint Hypermobility: A Systematic Review (2025) · cites this paper as [55]
Cites
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Role of Anxiety in Individuals with Generalized Joint Hypermobility: A Systematic Review
van Die-de Vries, J. E., Rameckers, E., Calders, P., Engelbert, R. H., Ramaekers, S. P., Goossens, M. E., & Verbunt, J. A. (2025) · Archives of Rehabilitation Research and Clinical Translation · doi:10.1016/j.arrct.2025.100467 · Cited by 1 · see citing works
“55 Two studies included patients with chronic musculoskeletal pain (CMP) with and without GJH and healthy adolescents with and without GJH. 25,57 Elevated scores of perceived harmfulness in activities, as construct of pain-related fear, were experienced in adolescents with CMP compared to healthy…”
Influential
- Authors
- Tran, S. T., Jagpal, A., Koven, M. L., Turek, C. E., Golden, J. S., & Tinkle, B. T.
- Affiliations
- DePaul University (US)
- Peyton Manning Children’s Hospital at St.Vincent (US)
- Corresponding author
- Tran, Susan T
- Venue
- Journal of Child Health Care
- Publisher
- SAGE Publications
- Published
- 2019-08-01
- Volume
- 24
- Issue
- 3
- Pages
- 444-457
- ISSN
- 1367-4935 (ISSN-L)
- 1741-2889
- OpenAlex
- W2966509622
- Cited by
- 25
- References
- 18
- Citations by year
- 2025: 7 · 2024: 4 · 2023: 5 · 2022: 5 · 2021: 2 · 2020: 2
- FWCI
- 1.36
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Child Health Care (publishedVersion)
- PubMed (publishedVersion)
- Funders
- College of Science and Health (DePaul University Faculty Research Grant)
- Topics
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Connective tissue disorders research
- Health Sciences › Medicine › Pharmacology › Musculoskeletal pain and rehabilitation
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Pediatric Pain Management Techniques
- Keywords
- hypermobile Ehlers-Danlos syndrome, youth, physical function, psychological functioning, pain, fatigue, somatic symptoms, anxiety, depression, functional disability, connective tissue diseases
- MeSH terms
- Activities of Daily Living, Adolescent, Anxiety, Depression, Ehlers-Danlos Syndrome, Fatigue, Female, Humans, Male, Pain
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