Healthcare resource utilization and persistence in children and adults with Dravet syndrome receiving fenfluramine: a retrospective analysis using United States claims data

Purpose Dravet syndrome (DS) is a rare and lifelong developmental and epileptic encephalopathy marked by high seizure burden and developmental, motor, and behavioral impairments. Using US claims data, treatment persistence and healthcare resource utilization (HCRU) were analyzed in individuals with DS. Methods Children and adults with DS in the US Komodo Health claims database who received fenfluramine from 10/1/2020–06/30/2023 with continuous claims data 6 months pre- and post-fenfluramine initiation were included. Two cohorts were defined: "All Fenfluramine (FFA)" and "No Concomitant Stiripentol (STP) or Cannabidiol (CBD)". Persistence was analyzed using Kaplan-Meier survival analysis and log-rank tests. In persistent individuals, Wilcoxon signed-rank tests were used to compare change in HCRU 6 months pre- and post-fenfluramine initiation. Results In 425 (All FFA) and 190 individuals (No Concomitant STP/CBD), 6-month persistence rates were 84%. In 355 and 160 persistent individuals in each cohort, reductions in unique rescue ASM fills (15%, p =0.005; 28%, p =0.001, respectively), neurology visits (22%, p <0.001; 34%, p <0.001), seizure-related emergency room (44%, p <0.001; 64%, p <0.001), seizure-related inpatient (31%, p =0.029; 53%, p =0.002), and seizure-related outpatient visits (19%, p =0.004; 25%, p =0.008) were observed 6 months post-fenfluramine initiation. Conclusions High fenfluramine treatment persistence indicates that children and adults with DS tend to continue with fenfluramine treatment, regardless of their concomitant ASM regimen. Significant reductions in HCRU in were observed in individuals receiving fenfluramine ≥6 months; however, further research is warranted in this area.