P105 Healthcare use by women with Joint hypermobility and Ehlers-Danlos syndromes in Northumberland
Authors: Saravanan Vadivelu ,   The Ehlers-Danlos Support UK, Reinhold Emma , Demmler Joanne , Loughran Iain , Frankel Ben 
Published: April 2024

Background/Aims

In 2017, the diagnosis of Joint Hypermobility Syndrome was withdrawn and combined with hypermobile form of Ehlers-Danlos syndrome (hEDS). International Consortium on Ehlers-Danlos syndromes proposed new clinical criteria for hEDS and it recommended the concept of Hypermobility Spectrum Disorders (HSDs) when these criteria are not met. None of these three diagnostic terms JHS, HSD and hEDS fully explain the complexity of this heterogenous condition as the criteria do not take into account many co-morbidities such as anxiety, autism, ADHD, bowel and bladder issues, pregnancy complications, dysautonomia, allergies, and more. Health services are organised on the assumption that it is a benign musculoskeletal condition. Health burden from both joint hypermobility and the associated co-morbidities is not known as these patients are usually discharged after episodic care by most services that work in silos. Hence we sought to measure the pattern and costs of secondary NHS healthcare use in this patient group.

Methods

Using primary care clinical systems from 30 of 36 GP surgeries in Northumberland (approximately 300,000 total population), we determined the number of people with SNOMED codes synonymous to hypermobility; ‘Benign joint hypermobility’ or ‘Hypermobility syndrome’ was the code recorded in 90% of patients, with less than 10% coded as EDS or subtypes. For the purpose of statistical analysis, we grouped all under the newer diagnostic terms hEDS/HSD. RAIDR, the UK’s leading health intelligence tool, was used to compare secondary healthcare activity and costs between patients with and without hEDS/HSD in Northumberland.

Results

Prevalence of hEDS/HSD in GP records was 4.4 per 1000. Women of childbearing age are affected more than men (Male : Female ratio 3:1). Hospital admissions to General Medicine, Obstetrics & Gynaecology, Surgery, and Orthopaedics were significantly higher in women with hEDS/HSD. Outpatient attendances to Rheumatology, Physiotherapy, Orthopaedics, and Obstetrics & Gynaecology were also higher in women. Male patients with hEDS/HSD where younger than female patients; they presented more often to mental health, physiotherapy and paediatric outpatients compared to those without hEDS/HSD. The cost of secondary care treatment per patient with hEDS/HSD during 2022 was £932.37 compared to £731.88 in those without. For 1,302 patients with diagnoses synonymous with hEDS/HSD, the total additional cost for A&E, Acute Inpatient and Outpatients in 2022 was £261,037. This excludes mental healthcare costs, although there were around twice the number of appointments.

Conclusion

We found a diagnosed prevalence of hEDS/HSD of one in 227 people in Northumberland. These patients have a significantly higher usage of secondary care, and thereby a higher average healthcare utilisation cost. The next steps would be expansion of this study, along with more in-depth analysis of reasons for secondary healthcare usage. This should inform commissioning of appropriate integrated health services for people with these complex conditions.

Disclosure

V. Saravanan: None. E. Reinhold: None. J. Demmler: None. I. Loughran: None. B. Frankel: None.