Patient and Caregiver Health State Utilities in Tuberous Sclerosis Complex.

ABSTRACT:

Background

Tuberous sclerosis complex (TSC) is a rare multisystem disorder often associated with treatment-resistant epilepsy. Cost-effectiveness analysis for new antiseizure medications typically requires health state utilities (HSUs) that reflect the burden of a given condition.

Objective

This study aimed to estimate HSUs, with a focus on valuing the impact of seizure type and seizure frequency on health-related quality of life (HRQL) for patients with TSC and their caregivers.

Methods

A targeted literature review and qualitative research with healthcare professionals and caregivers informed the development of health state vignettes describing the experience of living with TSC or caring for a child with TSC. Vignettes were evaluated in interviews with the UK general

SUBMITTER: Lo SH 

PROVIDER: S-EPMC8441242 | biostudies-literature | 2022 Jan

REPOSITORIES: biostudies-literature