Epilepsy, impaired functioning, and quality of life in patients with tuberous sclerosis complex.

ABSTRACT:

Objective

To estimate health-related quality of life (HRQoL) in patients with tuberous sclerosis complex (TSC) and associated manifestations and to identify potential factors associated with HRQoL in this population of patients.

Methods

We performed a retrospective chart review of adults with TSC who attended the outpatient clinic of the University Medical Center Utrecht in the Netherlands from 1990 to 2015 (N = 363; on average 33.6 years of follow-up). HRQoL data were assessed in 2012 using the Health Utility Index version 3 (HUI-3) questionnaire completed by patients or caregivers (N = 214 with HUI score and ≥1 TSC manifestation, including renal angiomyolipomas [rAMLs], subependymal giant cell astrocytoma [SEGA], or epilepsy).

Results

Of 214 patients in the study sa

SUBMITTER: Vergeer M 

PROVIDER: S-EPMC6885664 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature