Abstracts

Rationale: Limited data exist on healthcare costs and burden of illness of Dravet syndrome, a severe and intractable childhood-onset epilepsy. This study provides the largest analysis to date of healthcare utilization and cost for Dravet syndrome (DS) patients. Methods: In this retrospective case-control study, Commercial, Medicare and Medicaid medical claims data (Truven Health Analytics) from 2010-2015 were queried to identify patients with DS, defined as patients with intractable epilepsy and intellectual disability, and with a diagnosis of febrile seizures or ≥2 prescriptions for an anti-epilepsy drug (AED) at index. Exclusion criteria included diagnoses and prescriptions for drugs unlikely to be associated with DS (e.g., traditional sodium channel blockers). Controls without epilepsy, seizure disorders or prescriptions for specified AEDs were matched to patients with DS by age, gender, US region and consistent insurance coverage. Direct medical costs and utilization were assessed for a 2-year outcome period from date of first epilepsy/seizure diagnosis or AED in the data period (index). Costs and utilization were averaged and reported on a per patient per year (PPPY) basis. Costs were normalized to 2017 dollars at 3% per annum. Results: A total of 1104 patients with DS were identified; 343 with Commercial insurance, 710 with Medicaid and 51 covered by Medicare. Average age was 12, 16 and 73 years, respectively.  Levetiracetam and sodium valproate were the most commonly used drugs at index. Average PPPY medical + drug costs were significantly higher for patients with DS vs. matched controls; Commercial: $32,179 vs. $2,515; Medicaid: $33,165 vs. $4,522; Medicare: $22,348 vs. $9,248, (all p≤0.0001). Among Commercial and Medicare DS patients, inpatient care was the biggest contributor to total costs; $9,698 and $6,563, respectively; among Medicaid patients, the biggest cost contributor was home health care visits, averaging $10,486 PPPY. Medical service utilization was also significantly higher among DS patients compared to controls; DS patients covered under Commercial or Medicaid utilized medical services at > 6 times the frequency of their matched controls, while Medicare DS patients utilized over twice as many services as matched controls, (all p < 0.001). Similarly, drug utilization was significantly higher for DS patients vs. controls, including non-AEDs, (all p < 0.0001). The biggest contributor to overall medical service utilization was outpatient physician visits for DS patients covered under Commercial (11 visits PPPY) and Medicare (18.2 visits PPPY) plans, and home health services (44 visits PPPY) for DS patients covered under Medicaid. Conclusions: Dravet syndrome has been linked to increased risk for injury, long-term disability and early mortality. This analysis demonstrates that a considerable direct cost burden is also associated with the condition. The substantial burden on patients and the healthcare system highlights the need for new and effective therapies. Funding: Funded by GW Research Ltd