Understanding the Incidence, Prevalence, Characteristics, and Healthcare Resource Utilization for Patients With Dravet and Lennox-Gastaut Syndromes
Rejena Ameen1, Joseph Sullivan2, Elaine Wirrell3, Amelia Boehme4, Rebecca Zhang-Roper1, Patrick Healy1, Amélie Lothe1, Wesley Kerr5
1UCB, 2University of California San Francisco Weill Institute for Neurosciences, Benioff Children’s Hospital, 3Mayo Clinic/Dept of Child Neurology, 4Aetion, Inc., 5University of Pittsburgh
Objective:
To describe the real-world incidence and prevalence, patient characteristics, and healthcare resource utilization (HCRU) of patients with Dravet (DS) and Lennox-Gastaut (LGS) syndromes.
Background:
DS and LGS are severe developmental and epileptic encephalopathies associated with seizures and cognitive impairment. DS and LGS are highly treatment resistant, with poor seizure and non-seizure control.
Design/Methods:
This retrospective cohort analysis used real-world, administrative claims data from the Merative® MarketScan® US database from January 1, 2017, to December 31, 2022. Patients were required to have: a confirmed DS or LGS diagnosis using ICD-10 codes (DS and LGS codes were effective October 2020 and October 2015, respectively), complete enrollment for year of interest, and one calendar year baseline enrollment (30-day allowable gap) before January 1 of the year of interest. Outcomes assessed included yearly prevalence and incidence rates (primary), baseline patient sociodemographic characteristics, and baseline and follow-up HCRU. Descriptive statistics were used with no formal statistical comparisons.
Results:
579 and 7846 patients with DS and LGS were identified, respectively; mean age (SD) at index was 13.2 (10.9) years and 20.7 (15.4) years, respectively. From 2020-2022, DS incidence and prevalence per 100,000 years ranged from 0.41 (95% CI, 0.31-0.50) to 1.04 (0.89-1.19) and 0.93 (0.79-1.07) to 2.03 (1.82-2.23), respectively. From 2018-2022, LGS incidence and prevalence per 100,000 years ranged from 3.11 (2.85-3.37) to 6.38 (6.02-6.74) and 12.38 (11.91-12.85) to 19.55 (18.91-20.19), respectively. Median follow-up time in DS and LGS was 1.7 and 2.0 years, respectively. Mean 6-month total costs increased from baseline (DS: $36,735; LGS: $45,573) to follow-up (DS: $43,974; LGS: $49,176). Mean 6-month epilepsy-related outpatient visits increased from baseline (DS: 1.38; LGS: 1.74) to follow-up (DS: 6.30; LGS: 3.06).
Conclusions:
This real-world study showed that LGS incidence and prevalence was higher than DS. Compared to pre-diagnosis baseline, HCRU increases were observed during follow-up in both DS and LGS.
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