Understanding Ehlers-Danlos Syndrome: A Claims-Based Analysis of Healthcare Cost Patterns

Area of Science:

• Health Economics
• Medical Research
• Clinical Practice

Background:

• Ehlers-Danlos Syndrome (EDS) is a rare connective tissue disorder with significant clinical complexity.
• The economic burden of EDS in the United States remains largely unquantified.
• Understanding healthcare utilization and costs is crucial for managing EDS patients.

Purpose of the Study:

• To evaluate the all-cause healthcare expenditures for individuals newly diagnosed with EDS.
• To compare costs during the year preceding diagnosis with the first two years following diagnosis.
• To identify factors influencing healthcare costs in the EDS population.

Main Methods:

• Retrospective cohort study utilizing the Merative™ MarketScan® database (2016-2022).
• Inclusion criteria required continuous enrollment 12 months pre-diagnosis and 24 months post-diagnosis.
• Two-part models (logistic regression and GLM gamma) analyzed cost probability and intensity.

Main Results:

• The study included 4,765 patients (78% female, mean age 28.8 years).
• Total annual costs increased from $19,733 pre-diagnosis to $28,922 in Year 1 post-diagnosis, then $21,804 in Year 2.
• Outpatient and pharmacy services were primary cost drivers; inpatient admissions were resource-intensive.
• Female sex and higher comorbidity scores were associated with increased costs.

Conclusions:

• Healthcare costs for EDS patients peak in the first year post-diagnosis and remain elevated in the second year.
• EDS imposes a substantial and persistent economic impact on the healthcare system.
• Patient characteristics, especially comorbidities, significantly influence healthcare expenditures.