Comparing the Economic Burden in Patients With vs. Without Ehlers-Danlos Syndrome (EDS) Using a Large US Electronic Health Records Database
Author(s)
Jennifer Cheng, MS1, Chloe T Basch, N/A2, Natalia Coenen, MPH1, Megan Allen, PhD3, Maryam Ajose, MPH1, Janna Manjelievskaia, PhD, MPH1.
1Veradigm, Raleigh, NC, USA, 2Wesleyan University, Middletown, CT, USA, 3Damon Runyon Cancer Research Foundation, New York, NY, USA.
1Veradigm, Raleigh, NC, USA, 2Wesleyan University, Middletown, CT, USA, 3Damon Runyon Cancer Research Foundation, New York, NY, USA.
OBJECTIVES: This study compared the all-cause healthcare resource utilization (HCRU) and costs per-patient per-year (PPPY) of patients with and without an EDS diagnosis using US real-world data.
METHODS: Using the Veradigm Network EHR linked to Komodo Health claims, we identified adults with an EDS diagnosis between 2010-2023 (earliest event=index). Patients were required to have ≥12 months of EHR/continuous claims enrollment pre- and post-index. EDS patients were directly matched (1:3) to non-EDS controls by age, sex, index year, and continuous enrollment. Demographics are described at variable-length baseline, while all-cause HCRU (number of visits/claims) and costs PPPY across inpatient (IP) admissions, emergency room (ER) visits, outpatient visits, pharmacy, and total healthcare burden were evaluated in both variable-length baseline and follow-up.
RESULTS: This study included 38,848 EDS patients and 116,544 non-EDS controls. Mean age overall was 32.6 years and majority were female (82.1%) and White (EDS: 65.9% vs non-EDS: 49.5%, p<0.0001). Over the variable-length baseline period of 3.3 and 3.4 years for EDS patients and non-EDS controls, respectively, mean total costs PPPY were significantly higher for EDS patients vs non-EDS controls ($41,626 vs $19,704, p<0.0001). During the variable-length follow-up of 3.2 and 3.1 years, respectively, total costs followed similar significant trends. By service type, utilization PPPY significantly differed by cohort across IP admissions (0.4 vs 0.2), ER visits (3.3 vs 1.7), OP visits (55.7 vs 22.7), and pharmacy claims (55.4 vs 24.5) (all p<0.001). Costs PPPY were highest amongst EDS (vs non-EDS) in IP admissions ($13,781 vs $3,662), ER visits ($5,261 vs $1,677), OP visits ($25,063 vs $8,467), and pharmacy ($7,193 vs $2,118) (all p<0.001).
CONCLUSIONS: This study demonstrates the differential and sustained economic burden of EDS compared to the general non-EDS population. Combined with the substantial clinical burden experienced by patients with EDS, our findings highlight the need for improved treatment, increased awareness, and research funding.
METHODS: Using the Veradigm Network EHR linked to Komodo Health claims, we identified adults with an EDS diagnosis between 2010-2023 (earliest event=index). Patients were required to have ≥12 months of EHR/continuous claims enrollment pre- and post-index. EDS patients were directly matched (1:3) to non-EDS controls by age, sex, index year, and continuous enrollment. Demographics are described at variable-length baseline, while all-cause HCRU (number of visits/claims) and costs PPPY across inpatient (IP) admissions, emergency room (ER) visits, outpatient visits, pharmacy, and total healthcare burden were evaluated in both variable-length baseline and follow-up.
RESULTS: This study included 38,848 EDS patients and 116,544 non-EDS controls. Mean age overall was 32.6 years and majority were female (82.1%) and White (EDS: 65.9% vs non-EDS: 49.5%, p<0.0001). Over the variable-length baseline period of 3.3 and 3.4 years for EDS patients and non-EDS controls, respectively, mean total costs PPPY were significantly higher for EDS patients vs non-EDS controls ($41,626 vs $19,704, p<0.0001). During the variable-length follow-up of 3.2 and 3.1 years, respectively, total costs followed similar significant trends. By service type, utilization PPPY significantly differed by cohort across IP admissions (0.4 vs 0.2), ER visits (3.3 vs 1.7), OP visits (55.7 vs 22.7), and pharmacy claims (55.4 vs 24.5) (all p<0.001). Costs PPPY were highest amongst EDS (vs non-EDS) in IP admissions ($13,781 vs $3,662), ER visits ($5,261 vs $1,677), OP visits ($25,063 vs $8,467), and pharmacy ($7,193 vs $2,118) (all p<0.001).
CONCLUSIONS: This study demonstrates the differential and sustained economic burden of EDS compared to the general non-EDS population. Combined with the substantial clinical burden experienced by patients with EDS, our findings highlight the need for improved treatment, increased awareness, and research funding.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
EE142
Topic
Economic Evaluation
Topic Subcategory
Cost/Cost of Illness/Resource Use Studies
Disease
Musculoskeletal Disorders (Arthritis, Bone Disorders, Osteoporosis, Other Musculoskeletal), Rare & Orphan Diseases