Tuberous sclerosis complex (TSC) is characterized as a rare hereditary disorder impacting an estimated 25,000-40,000 persons in the United States and 1-2 million persons worldwide (Song et al., 2017). Individuals with TSC have extensive comorbidities that affect their health-related quality of life, healthcareutilization, and expenditure. The current literature lacks documentation on the impact of the various comorbidities and their association with healthcare utilization and expenditures among individuals withTSC. The purpose of this dissertation study was to examine the trends in healthcare utilization(emergency department and inpatient admission) and expenditures that can be identified among individuals diagnosed with TSC, with and without epilepsy. Multivariate analysis was conducted to compare theproportions of TSC patients with epilepsy to the proportions of TSC patients without epilepsy, withregards to the use of inpatient hospital (IP) care, emergency room (ER) use, and total expenditures. Among the 3,572 patients analyzed, 65.5% of the study population were TSC patients with epilepsy, compared with 34.5% of patients without epilepsy. Approximately 81% of the patients had between one to ten comorbidities and the expected primary payer for most patients (67%), was public health insurance (26% Medicare, and 40.7% Medicaid). The odds of hospital admission were nearly two-fold higher among those with epilepsy (OR and CI). This finding indicated that increased ED use among TSC patients with epilepsymay also lead to increased hospitalization. The overall mean annual expenditure for ED visits by TSC patients without epilepsy was slightly lower than that for patients with epilepsy. However, for an inpatient stay, TSC patients without epilepsy had higher total expenditures ($63,520) compared with TSC patients with epilepsy ($40,248).
| Date of Award | Jan 1 2020 |
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| Original language | English |
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| Supervisor | Sarah Ransdell (Supervisor), Sara Knox (Advisor) & Jodi Clark (Advisor) |
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