Healthcare utilisation and healthcare costs for patients with hypermobile spectrum disorders and coexisting functional dyspepsia and/or irritable bowel syndrome
Abstract
Background/objective Disorders of Gut–Brain interactions (DGBI), for example, Functional Dyspepsia (FD) or Irritable Bowel syndrome (IBS), are common in patients with hypermobile Ehlers-Danlos syndrome/hypermobile spectrum disorder (hEDS/HSD). DGBI is associated with significant healthcare use—how this applies to patients with coexisting hEDS/HSD is unknown. Design A cross-sectional study was performed. Patients recruited from tertiary neurogastroenterology clinics and from Ehlers-Danlos Support UK completed questionnaires, characterising their demographic, healthcare data and expenses, over 6 months (July 2021–January 2022) and their Rome IV diagnoses. National Health Service (NHS) unit costs were used. Healthcare use and costs were compared across and between DGBI and non-DGBI subgroups. Regression analysis was performed to determine predictors of costs. p £20 000 pp/6 months). Predictors of rising costs were FD, non-gastrointestinal comorbidities, lower body mass index, positive avoidant/restrictive food intake disorders screen, having an altered diet, polypharmacy, visits to different healthcare professionals and tertiary neurogastroenterology recruitment. Conclusions It is imperative to develop cost-effective multidisciplinary services for hEDS/HSD patients with FD, particularly in the current fiscal climate, as they have significant healthcare use and costs.
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In a large case-control study, 98% of subjects with hEDS/HSD fulfilled symptom-based criteria for one or more Rome IV DGBI, compared with 47% of controls (p < 0.001).
“In a large case–control study, 98% of subjects with hEDS/HSD fulfilled symptom‐based criteria for 1 or more Rome IV DGBI, compared with 47% of controls (p < 0.001) and had high healthcare utilization and considerable health impairment [9, 13].”
From Meta-Analysis: Chronic Gastrointestinal Symptoms and Comorbidities in Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders (2026) · cites this paper as [13]
Management of gastrointestinal symptoms in hEDS/HSD remains challenging and results in increased healthcare utilization.
“their management remains challenging, resulting in increased healthcare utilization [13].”
From Meta-Analysis: Chronic Gastrointestinal Symptoms and Comorbidities in Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders (2026) · cites this paper as [13]
Cites
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Development and Validation of the Rome IV Diagnostic Questionnaire for Adults
Palsson, O. S., Whitehead, W. E., van Tilburg, M. A. L., Chang, L., Chey, W., Crowell, M. D., Keefer, L., Lembo, A. J., Parkman, H. P., Rao, S. S. C., et al. (2016) · Gastroenterology · doi:10.1053/j.gastro.2016.02.014 · Cited by 719 · see citing works
British Society of Gastroenterology guidelines on the management of irritable bowel syndrome
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“…of these drug classes and the fact that current guidelines in the British Society of Gastro-enterology advocate for the avoidance of these medications in the management of FD and/or IBS 36 37 and furthermore general guidelines advocate for the avoidance of opioids for chronic non-cancer pain.”
Irritable bowel syndrome: Pathogenesis, diagnosis, treatment, and evidence-based medicine
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Lam, C., Amarasinghe, G., Zarate-Lopez, N., Fikree, A., Byrne, P., Kiani-Alikhan, S., Gabe, S., & Paine, P. (2023) · Frontline Gastroenterology · doi:10.1136/flgastro-2022-102088 · Cited by 23 · see citing works
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Kulin, D., Holtmann, G., Fairlie, T., Staller, K., Nurko, S., Keefer, L., Drossman, D. A., Jones, M. P., Aziz, Q., & Shah, A. (2026) · Alimentary Pharmacology & Therapeutics · doi:10.1111/apt.70856
- Authors
- Upadhyaya, A., Topan, R., Pandya, S., Williams, S., Fragkos, K., Zarate-Lopez, N., Roukas, C., Mihaylova, B., & Fikree, A.
- Affiliations
- Queen Mary University of London (GB)
- Royal London Hospital for Integrated Medicine (GB)
- University College London (GB)
- Gastoenterology and GI Physiology, University College London Hospitals NHS Foundation Trust, London, London, UK
- University College London Hospitals NHS Foundation Trust (GB)
- ORCID
- Venue
- Frontline Gastroenterology
- Publisher
- BMJ
- Published
- 2025-09-11
- Pages
- flgastro-2025-103250
- ISSN
- 2041-4137 (ISSN-L)
- 2041-4145
- OpenAlex
- W4414154028
- Cited by
- 1
- References
- 11
- Citations by year
- 2026: 1
- FWCI
- 0.96
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Frontline Gastroenterology (publishedVersion)
- Topics
- Health Sciences › Medicine › Gastroenterology › Gastrointestinal motility and disorders
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Health Sciences › Medicine › Epidemiology › Chronic Disease Management Strategies
- Keywords
- hypermobile Ehlers-Danlos syndrome, functional dyspepsia, irritable bowel syndrome, functional gastrointestinal disorders, health care utilization, health care costs, cost predictors, polypharmacy, avoidant/restrictive food intake disorder, multidisciplinary care
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