Cognitive Burden of Seizures in Patients with Tuberous Sclerosis Complex (TSC) for Health-Related Quality of Life (HRQoL) and Functional Status (P6.288)

Objective: To describe the cognitive burden of patients with TSC-associated epilepsy. Background: Cognitive impairment is common in patients with epilepsy, but is not well documented among patients with TSC-associated epilepsy. Design/Methods: A retrospective chart review of adult patients with TSC-associated epilepsy followed in a TSC specialty center at the University Medical Center Utrecht in the Netherlands from 1990–2015 (n=237; 7,860 person-years follow-up). Health-related quality of life (HRQoL) was measured in 2012 via a generic Health Utility Index (HUI) with 8 dimensions (e.g., cognition, vision, pain), with 61.2% response rate (145 patients or caregivers/237). Cognitive burden was described overall and in patients with and without cognitive impairment (based on physician assessment). Results: Among patients with TSC-epilepsy (mean age in 2015: 46 years, 56% males), 76% had cognitive impairment (any level). Based on patients’ records, 34% experienced generalized seizures (38% of those with cognitive impairment and 20% of those without), 60% experienced focal seizures (62% and 53%, respectively) and 20% were never seizure-free (25% and 5%, respectively). Compared to patients without cognitive impairment, patients with cognitive impairment were more likely to live in a group home (11% vs. 76%, p Conclusions: The cognitive burden of patients with TSC-associated epilepsy is high and associated with lower HRQoL and higher AED use. Whether reduction in the number of seizures has the potential to reduce the cognitive burden of these patients remains uncertain. Study Supported by: Novartis Pharmaceuticals Corporation Disclosure: Dr. Zonnenberg has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with I received personal compensation for Novartis Pharmaceuticals Inc for consulting, advisory boards, and speaking. Dr. de Ranitz-Greven has nothing to disclose. Dr. Ionescu-Ittu has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with I am an employee if Analysis Group, an economic consulting firm that is engaged by a variety of clients in the bio-medical arena for a range of services including the development of protocols, posters, abstracts, and manuscripts for health economics and o. Dr. Ionescu-Ittu has received research support from I am an employee if Analysis Group, an economic consulting firm that is engaged by a variety of clients in the bio-medical arena for a range of services including the development of protocols, posters, abstracts, and manuscripts for health economics and o. Dr. Emond has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with I am an employee if Analysis Group, an economic consulting firm that is engaged by a variety of clients in the bio-medical arena for a range of services including the development of protocols, posters, abstracts, and manuscripts for health economics and o. Dr. Emond has received research support from I am an employee if Analysis Group, an economic consulting firm that is engaged by a variety of clients in the bio-medical arena for a range of services including the development of protocols, posters, abstracts, and manuscripts for health economics and o. Dr. Duh has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with I am an employee if Analysis Group, an economic consulting firm that is engaged by a variety of clients in the bio-medical arena for a range of services including the development of protocols, posters, abstracts, and manuscripts for health economics and o. Dr. Duh has received research support from My employer Analysis Group has received research funds from various pharmaceutical companies. Dr. Neary has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with I am an employee of Novartis Pharmaceuticals Corporation. Dr. Vergeer has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Owner and employee of Redgrasp (a company in healthcare performance support). Dr. Vergeer has received compensation for serving on the Board of Directors of Owner and employee of Redgrasp (a company in healthcare performance support). Dr. Vergeer has received research support from Research support by Analysis Group, sponsored by Novartis.