Lennert Barb, Farrelly Eileen, Sacco Patricia, Pira Geraldine, Frost Michael
Xcenda, LLC, Palm Harbor, FL 34685, USA.
J Child Neurol. 2013 Apr;28(4):461-9. doi: 10.1177/0883073812448437. Epub 2012 Jul 6.
Seizures are a hallmark manifestation of tuberous sclerosis complex, yet data characterizing resource utilization are lacking. This retrospective chart review was performed to assess the economic burden of tuberous sclerosis complex with neurologic manifestations. Demographic and resource utilization data were collected for 95 patients for up to 5 years after tuberous sclerosis complex diagnosis. Mean age at diagnosis was 3.1 years, with complex partial and infantile spasms as the most common seizure types. In the first 5 years post-diagnosis, 83.2% required hospitalization, 30.5% underwent surgery, and the majority of patients (90.5%) underwent ≥3 testing procedures. In 79 patients with a full 5 years of data, hospitalizations, intensive care unit stays, diagnostic testing, and rehabilitation services decreased over the 5-year period. Resource utilization is cost-intensive in children with tuberous sclerosis complex and associated seizures during the first few years following diagnosis. Improving seizure control and reducing health care costs in this population remain unmet needs.
癫痫发作是结节性硬化症的标志性表现，但缺乏关于资源利用情况的相关数据。本回顾性病历审查旨在评估伴有神经系统表现的结节性硬化症的经济负担。收集了95例患者在结节性硬化症诊断后长达5年的人口统计学和资源利用数据。诊断时的平均年龄为3.1岁，复杂部分性发作和婴儿痉挛是最常见的癫痫发作类型。在诊断后的前5年，83.2%的患者需要住院治疗，30.5%的患者接受了手术，大多数患者（90.5%）接受了≥3项检测程序。在79例有完整5年数据的患者中，住院、重症监护病房住院、诊断检测和康复服务在5年期间有所减少。在诊断后的最初几年里，结节性硬化症及相关癫痫发作患儿的资源利用成本很高。改善该人群的癫痫控制和降低医疗成本仍是未满足的需求。
