title: Direct medical costs for patients with tuberous sclerosis complex and surgical resection of subependymal giant cell astrocytoma: a US national cohort study.
abstract: OBJECTIVE
  To estimate direct medical costs for patients with tuberous sclerosis complex (TSC) and surgical resection of subependymal giant-cell astrocytoma (SEGA).
  
  
  METHODS
  This retrospective cohort study selected patients who had SEGA surgery and TSC claims between 2000-2011 from three large US nationwide claims databases. Selected patients were age 35 or less and had continuous health insurance in the year before and the year after their first SEGA surgery claim. The study examined the patients' demographic and clinical characteristics and estimated inpatient, outpatient, medication, and total medical costs paid by insurance companies for the pre-surgery year, post-surgery year, and other study periods, respectively. Repeated measures analysis and bootstrapping technique were used to assess the impact of the surgery on the direct medical costs.
  
  
  RESULTS
  Select patients (n = 47) had a mean baseline age of 11.6 years and 66% were male. Many had seizures (91.0%), hydrocephalus (59.6%), vision disorders (38.3%), stroke and hemiparesis (36.2%), and shunt (34.0%) in the pre-surgery year. The mean direct medical costs were $8543 (inpatient: $3770; outpatient: $3473; medication: $1300) for the pre-surgery year, and $85,397 (inpatient: $71,562; outpatient: $11,497; medication: $2338) for the post-surgery year. With the exclusion of the costs during the surgery month, the inpatient, outpatient, medication, and total costs in the post-surgery year were 1.6-4.3 times as much as the costs in the pre-surgery year (inpatient: 4.3:1; outpatient: 2.5:1; medication: 1.6:1; total: 3.1:1, p < 0.05). Repeated measures analysis with bootstrapping confirmed a link between the surgery and increases in direct medical costs (p < 0.05).
  
  
  CONCLUSIONS
  SEGA surgery had a substantial impact on direct medical costs. TSC patients with the surgery experienced significant post-surgery increases in their inpatient, outpatient, and medication costs. Additional research should be conducted to examine the surgery's cost-impact in a longer duration, or to compare the cost-effectiveness of the surgery vs other treatments.
authors.affiliation: Kailo Research Group , Indianapolis, IN , USA.
authors.forename: Peter
authors.initials: P
authors.lastname: Sun
authors.forename: Zhimei
authors.initials: Z
authors.lastname: Liu
authors.forename: Darcy
authors.initials: D
authors.lastname: Krueger
authors.forename: Michael
authors.initials: M
authors.lastname: Kohrman
mesh_terms: D000293:Adolescent; D000328:Adult; D001254:Astrocytoma / Q000191:economics* / Q000209:etiology / Q000601:surgery*; D001932:Brain Neoplasms; D002648:Child; D002675:Child, Preschool; D005260:Female; D005102:Health Expenditures / Q000706:statistics & numerical data*; D006801:Humans; D007345:Insurance Claim Review; D008297:Male; D019635:Neurosurgical Procedures / Q000191:economics*; D012189:Retrospective Studies; D014402:Tuberous Sclerosis / Q000150:complications / Q000191:economics*; D055815:Young Adult
keywords: Direct medical costs; Rare disease studies; Subependymal giant cell astrocytoma; Tuberous sclerosis complex