Data regarding health care-related costs and the burden of disease for non-EoE eosinophilic gastrointestinal diseases (EGIDs) are lacking, particularly from the patient perspective. We aimed to determine the patient-reported health care burden of disease and costs related to care for non-EoE EGIDs.
We performed a retrospective cohort study based in EGID Partners (egidpartners.org), an online patient-centered research network designed and launched in 2020 by patient advocacy groups (PAGs) and researchers. Subjects were recruited via informational emails, social media, directed messages through patient healthcare portals, webinars, and by physicians. Adult (≥18 years) EGID patients and caregivers of children < 18 years with EGIDs could join and complete surveys which included a burden of disease questionnaire. This instrument recorded patient-reported healthcare utilization over the prior year related to heath care visits and procedures, as well as out-of-pocket costs/payments. We calculated the median total costs and number of visits.
Of 58 non-EoE EGID patients with health care utilization data (mean (SD) age 29 (19) years; 69% female; 95% white; 88% with an atopic condition; mean (SD) 7.4 (9.9) years of symptoms prior to diagnosis), 13 had eosinophilic gastritis (EoG), 17 had eosinophilic enteritis (EoN), 6 had eosinophilic colitis (EoC), and 22 had multiple areas of overlap; additionally, 27 had esophageal involvement. The median number of health care visits over the prior year was 12 (IQR: 5-33; range 1-90), with a median of 5 outpatient doctor visits, 3 urgent care/ED visits or hospitalizations, and 2 endoscopy visits; results were similar for adult patient report (n=42) or caregiver report for pediatric patients (n=16) (Table). The annual median costs were $1000 (IQR: $100-$3570; range: 0-$100,400). Median costs for outpatient visits, testing, and medications were $250, $400, and $325, respectively. Costs were similar for adult patients and caregivers (Table).
Patients with non-EoE EGIDs experience a high health care burden, with frequent health care encounters (median of 1 encounter/month) and substantial out-pocket costs (median of $1000/year). Both adult and pediatric providers must maintain awareness of the substantial burden in costs to EGID patients, including challenges for patients to manage their disease given these costs.