ArticleMolecular genetics & genomic medicine2022
Resource utilization and multidisciplinary care needs for patients with Ehlers-Danlos syndrome.
Article in Molecular genetics & genomic medicine, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
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
13 citing papers in PubMed.
- An Online Pilates Program for People with Hypermobility: A Pragmatic Clinical Trial Looking at Function, Interoception, Kinesiophobia, and Physical Activity Levels.Journal of multidisciplinary healthcare · 2026Trial
- Age-related symptom clustering in pediatric hypermobility spectrum disorders: a scoping review.Orphanet journal of rare diseases · 2026Article
- Understanding Ehlers-Danlos Syndrome: A Claims-Based Analysis of Healthcare Cost Patterns.Journal of health economics and outcomes research · 2026Article
- Case Report: A rare presentation of vascular Ehlers-Danlos syndrome with a massive hemothorax and a chest wall hematoma.Frontiers in medicine · 2025Article
- Patient and parent knowledge, understanding, and concerns after a new diagnosis of Ehlers Danlos syndrome.Orphanet journal of rare diseases · 2024Article
- The need for primary care providers in the clinical management of hypermobility spectrum disorders and ehlers-danlos syndrome: a call to action.Rheumatology international · 2024Article
- Patient and Parent Knowledge, Understanding, and Concerns After a New Diagnosis of Ehlers Danlos Syndrome.Research square · 2024Article
- Diagnosis and treatment of the Ehlers-Danlos syndromes in China: synopsis of the first guidelines.Orphanet journal of rare diseases · 2024Article
- Cardiovascular Symptoms, Dysautonomia, and Quality of Life in Adult and Pediatric Patients with Hypermobile Ehlers-Danlos Syndrome: A Brief Review.Current cardiology reviews · 2024Review
- Barriers to the Diagnosis, Care, and Management of Pediatric Patients With Ehlers-Danlos Syndrome in the United States: A Qualitative Analysis.Global pediatric health · 2023Article
- Development of a Multidisciplinary Clinic for Patients with Ehlers Danlos Syndromes: Considerations and Strategies.Journal of multidisciplinary healthcare · 2023Article
- Resource utilization and multidisciplinary care needs for patients with Ehlers-Danlos syndrome.Molecular genetics & genomic medicine · 2022Article
- Gender dysphoria in adolescents with Ehlers-Danlos syndrome.SAGE open medicine · 2022Article
Corrections and comments
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundEhlers-Danlos syndrome (EDS) represents a family of heritable connective tissue disorders with overlapping phenotypic features, frequently including joint hypermobility, tissue fragility, and skin hyperextensibility. Comorbid symptoms are common for patients with EDS and include multiple body systems marked by neurologic, cardiovascular, gastrointestinal, musculoskeletal issues, chronic pain, headaches, and anxiety and depression. The many comorbidities lead to high disease burden, which requires greater healthcare utilization.
methodsThis survey of families examines healthcare utilization, of adults and minors, through evaluation of subspecialty care appointments across many healthcare systems in one region.
resultsThere were 155 adults and 83 minors with a diagnosis of EDS with a total of 693 unique visits across 27 different specialties at over 20 different hospitals or clinics in the surveyed area. Cardiology, neurology, and gastroenterology were the most utilized subspecialties for adults, while rheumatology, cardiology, and neurology were most utilized by minors. Many respondents (67%) reported their medical care needs are not being met, and 87% reported interest in a multidisciplinary clinic for EDS with the most interest in pain management, physical and occupational therapy, and rheumatology.
conclusionUnderstanding healthcare utilization and needs of those with EDS can provide the foundation for improved care for those with EDS through a coordinated multidisciplinary care model.
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