Abstracts

Rationale: Lennox-Gastaut syndrome (LGS) is a severe form of childhood-onset epilepsy characterized by intractable seizures, increased risk for injury, reduced quality of life, long-term disability, and early mortality. The Burden of Illness (BOI) associated with LGS has been minimally studied. Methods: Commercial and Medicaid insurance medical claims records (Truven Health Analytics) from 2010-2015 were queried to identify patients with intractable epilepsy, intellectual disability and ≥ 1 prescription from a group of pre-specified anti-epilepsy drugs (AED), with ≥ 2 years data.  After excluding patients with probable Dravet Syndrome or other specific conditions that would ordinarily preclude LGS, rufinamide use was selected as a key indicator of LGS given its almost exclusive use for this condition. Characteristics significantly predictive of rufinamide use vs. a non-LGS condition were then evaluated in non-rufinamide users meeting all other inclusion criteria to identify a larger sample of probable LGS patients. Controls without epilepsy, seizure disorders or prescriptions for pre-specified AEDs were matched to patients with LGS by age, gender, US region and consistent insurance coverage. Average per patient direct medical costs and utilization were assessed for a two-year outcome period from date of first epilepsy/seizure diagnosis or AED in the data period (index). Costs and utilization were averaged, normalized to 2017 dollars at 3% per annum, and reported on a per patient per year (PPPY) basis. Results: A total of 6,019 patients with LGS were identified; 2,270 with Commercial insurance, 3,749 covered under Medicaid. In both groups, mean age was 13 years and 53% of patients were male. In both payer groups, LGS patients utilized medical services at >8 times the frequency of their matched controls (all p < 0.001). Likewise, drug utilization was much higher for LGS patients vs. controls, including non-AEDs, (all p < 0.0001). Home health and outpatient physician services were the biggest contributors to overall medical service utilization for Commercial LGS patients (16 and 14 visits PPPY, respectively). For Medicaid patients, home health and ”other” outpatient visits (including case management and habilitation services) contributed most to overall medical utilization, (81 and 49 visits PPPY, respectively).  Average PPPY medical + drug costs were substantially higher for patients with LGS vs. matched controls; Commercial: $65,026 vs. $2,442, Medicaid: $63,930 vs. $3,849; (all p < 0.0001). Inpatient care was the biggest contributor to total costs among Commercial patients at $22,907 PPPY. Among Medicaid patients, the biggest cost contributor was home health, averaging $23,725 PPPY.  Conclusions: Lennox-Gastaut Syndrome has a substantial direct cost burden, reflected in high annual health plan costs and frequent utilization of health care services. Despite existing therapies, this evidence highlights a persistent burden on patients and the health care system that calls for new and effective medications. Funding: Funded by GW Research Ltd