TY - JOUR A1 - Strzelczyk, Adam A1 - Schubert-Bast, Susanne A1 - Simon, Andreas A1 - Wyatt, Geoffrey A1 - Holland, Rowena A1 - Rosenow, Felix T1 - Epidemiology, healthcare resource use, and mortality in patients with probable Lennox-Gastaut syndrome: A population-based study on German health insurance data T2 - Epilepsy & Behavior N2 - Highlights • German patients with LGS identified using most specific algorithm to date. • Prevalence of probable LGS with epilepsy diagnosis before age 6 was 6.5 per 100,000. • High healthcare costs of €22,787 PPY; mostly due to inpatient and home nursing care. • Costs were greater in patients prescribed rescue medications. • Over 10 years, LGS patients had significant mortality vs. controls (2.88 vs. 0.01%). Abstract Objective: This retrospective study examined patients with probable Lennox-Gastaut syndrome (LGS) identified from German healthcare data. Methods: This 10-year study (2007–2016) assessed healthcare insurance claims information from the Vilua Healthcare research database. A selection algorithm considering diagnoses and drug prescriptions identified patients with probable LGS. To increase the sensitivity of the identification algorithm, two populations were defined: all patients with probable LGS (broadly defined) and only those with a documented epilepsy diagnosis before 6 years of age (narrowly defined). This specific criterion was used as LGS typically has a peak seizure onset between age 3 and 5 years. Primary analyses were prevalence and demographics; secondary analyses included healthcare costs, hospitalization rate and length of stay (LOS), medication use, and mortality. Results: In the final year of the study, 545 patients with broadly defined probable LGS (mean [range] age: 31.4 [2–89] years; male: 53%) were identified. Using the narrowly defined probable LGS definition, the number of patients was reduced to 102 (mean [range] age: 7.4 [2–14] years; male: 52%). Prevalence of broadly defined and narrowly defined probable LGS was 39.2 and 6.5 per 100,000 people. During the 10-year study, 208 patients with narrowly defined probable LGS were identified and followed up for 1379 patient-years. The mean annual cost of healthcare was €22,787 per patient-year (PPY); greatest costs were attributable to inpatient care (33%), home nursing care (13%), and medication (10%). Mean annual healthcare costs were significantly greater for those with prescribed rescue medication (45% of patient-years) versus those without (€33,872 vs. €13,785 PPY, p < 0.001). Mean (standard deviation [SD]) annual hospitalization rate was 1.6 (2.0) PPY with mean (SD) annual LOS of 22.7 (46.0) days. Annual hospitalization rate was significantly greater in those who were prescribed rescue medication versus those who were not (2.2 [2.3] vs. 1.1 [1.6] PPY, p < 0.001). The mean (SD) number of different medications prescribed was 11.3 (7.3) PPY and 33.8 (17.0) over the entire observable time per patient (OET); antiepileptic drugs only accounted for 2.1 (1.1) of the medications prescribed PPY and 3.8 (2.0) OET. Over the 10-year study period, mortality in patients with narrowly defined probable LGS was significantly higher than the matched control population (six events [2.88%] vs. one event [0.01%], p < 0.001). Conclusion: Annual healthcare costs incurred by patients with probable LGS in Germany were substantial, and mostly attributable to inpatient care, home nursing care, and medication. Patients prescribed with rescue medication incurred significantly greater costs than those who were not. Patients with narrowly defined probable LGS had a higher mortality rate versus control populations. KW - Lennox-Gastaut syndrome KW - Prevalence KW - Burden of illness KW - Healthcare costs KW - Healthcare resource utilization KW - Rescue medication Y1 - 2021 UR - http://publikationen.ub.uni-frankfurt.de/frontdoor/index/index/docId/77917 UR - https://nbn-resolving.org/urn:nbn:de:hebis:30:3-779172 SN - 1525-5050 VL - 115 IS - 107647 PB - Elsevier CY - Amsterdam ER -