Disorders of Gut-Brain Interactions (DGBI) are common in patients with Hypermobile Ehlers-Danlos Syndrome/Hypermobile Spectrum Disorder (hEDS/HSD). DGBIs are often difficult to manage, with polypharmacy worsening symptoms1 and contributing to increased healthcare costs. No study to date has looked at medication use and costs in patients with DGBI and coexistent hEDS/HSD.
Methods
A cross-sectional study was performed in hEDS/HSD patients from EDS-UK and tertiary neurogastroenterology clinics. Patients completed a ROME IV and healthcare utilisation questionnaire (adapted from the IBD Boost Study2) to include comorbidities and medications prescribed over 6 months. Costs were calculated based on the NHS Business Services Authority Prescription Cost Analysis.3
Results
660 hEDS/HSD patients completed the study; 92.9% were female, median age of 39. All fulfilled ROME IV criteria for ≥1 DGBI; there was a median of 6 other co-morbidities (table 1). Polypharmacy was very common. Patients were on a median of 6 medications (maximum 23) over 6 months, which accounted for 12% of total healthcare costs. 99.4% were on ≥1, 73.2% were on ≥5, 34.8% were on ≥8, and 3.3% were on ≥15 medications. Anticholinergics (e.g. buscopan, cyclizine) were the most commonly prescribed (75.5%) and costliest medications (£105.33 per patient over 6 months) followed by neuromodulators and antihistamines/mast cell stabilisers (MCS) (table 1). of the 47.4% on an antihistamine and/or MCS, 39.3% of patients were diagnosed with mast cell activation syndrome (MCAS). 39.4% were prescribed opioids. Patients were on a maximum of 4 opioids, with 21.8% on >1, and 14 (2.1%) on >3 opioids. A minority (n=11) of patients were on a non-oral opioid formulation (i.e. patch, lozenge or lolly). 23.6% were on an anti-emetic; of this 9.0% were on ≥3.
Conclusions
Despite their significant gastrointestinal side effects, opioids and anticholinergic medication were widely used in this cohort. Polypharmacy within as well as across drug classes, is highly prevalent, with the pharmaceutical burden more pronounced than in the elderly population.4 With significant costs and negative health outcomes associated with polypharmacy, practices should be reviewed, and guidelines created regarding prescribing and indeed deprescribing in this group of patients.
References
Maher, et al. Expert Opinion on Drug Safety. 2014;13(1). Roukas, et al. Frontline Gastroenterology 2022;14(1). NHSBSA. Prescription Cost Analysis – England 2020/21 2021. NHS Digital Health Survey for England – 2016.