Presentation (CTI)

OBJECTIVES: Patients with EDS experience a high comorbidity burden across multiple organ systems. Real-world data quantifying the disease burden among EDS patients compared to the general population are lacking. This study characterizes the EDS population by comparing the comorbidity burden against a non-EDS control cohort using real-world data.
METHODS: We used data from the Veradigm Network EHR linked to Komodo Health claims to identify patients with an EDS diagnosis between 01/01/2010-12/31/2023 (earliest event=index). Patients were required to have ≥12 months of EHR/claims activity pre- and post-index and a known sex reported in their medical record. EDS patients were directly matched (1:3) to non-EDS individuals by age, sex, index, and continuous claims enrollment. Demographics were captured at baseline while clinical characteristics were evaluated in baseline and follow-up.
RESULTS: A total of 107,862 EDS patients and 323,586 non-EDS controls were included. Mean (SD) age was 35 (17.3) and majority were male (83.2%). Prevalence estimates of EDS were 0.07% for females and 0.02% for males, representing an overall prevalence of 0.04% in the study database. Compared to the non-EDS cohort, EDS patients had significantly higher proportions of all measured comorbidities, including fibromyalgia/other myalgias (34.0% vs 9.3%), non-traumatic dislocations/subluxations (11.0% vs 3.8%), easy bruising (1.6% vs 0.7%), migraines (45.2% vs 22.2%), chronic fatigue (45.9% vs 21.3%), asthma (30.0% vs 14.8%), anxiety (55.1% vs 30.2%), nausea (34.0% vs 16.7%), irritable bowel syndrome (15.3% vs 3.8%), and gastroesophageal reflux disease (33.4% vs 16.9%) during baseline (all p<0.0001). Similarly, EDS patients had significantly higher baseline medication use across pain (75.8% vs 51.5%), respiratory (70.2% vs 51.4%), antibiotics (79.5% vs 69.4%), and anti-anxiety (40.6% vs 18.5%) (all p<0.0001).
CONCLUSIONS: Our study highlights the increased comorbidity burden in EDS patients. With no disease-specific treatment options, this puts into perspective the continued need for personalized management of patient conditions and symptoms.