Tuberous Sclerosis Health Care Utilization Based on the National Inpatient Sample Database: A Review of 5655 Hospitalizations

Abstract

Introduction: Tuberous sclerosis complex (TSC) has an incidence of 1/6000 in the general population. Overall care may be complex and costly. We examine trends in health care utilization and outcomes of patients with TSC over the last decade.

Methods: The National Inpatient Sample (NIS) database for inpatient hospitalizations was searched for admission of patients with TSC.

Results: During 2000-2010, the NIS recorded 5655 patients with TSC. Most patients were admitted to teaching hospitals (71.7%). Over time, the percentage of craniotomies performed per year remained stable (P = 0.351). Relevant diagnoses included neuro-oncologic disease (5.4%), hydrocephalus (6.5%), and epilepsy (41.2%). Hydrocephalus significantly increased length of stay and hospital charges. A higher percentage of patients who underwent craniotomy had hydrocephalus (29.8% vs. 5.3%; P < 0.001), neuro-oncologic disease (43.5% vs. 3.4%; P < 0.001), other cranial diseases (4.2% vs. 1.2%; P < 0.001), and epilepsy (61.4% vs. 40.1%; P < 0.001).

Conclusions: Our study identifies aspects of inpatient health care utilization, outcomes, and cost of a large number of patients with TSC. These aspects include related diagnoses and procedures that contribute to longer length of stay, increased hospital cost, and increased in-hospital mortality, which can inform strategies to reduce costs and improve care of patients with TSC.

Keywords: Epilepsy; Health care utilization; Hydrocephalus; National Inpatient Sample; Neurosurgical care; Subependymal giant cell astrocytoma; Tuberous sclerosis complex.