Mapping epilepsy-specific patient-reported outcome measures for children to a proposed core outcome set for childhood epilepsy.

ABSTRACT:

Objective

The objectives of the study were to (1) map questions in epilepsy-specific patient-reported outcome measures (PROMs) of children's health-related quality of life (HRQoL) to a proposed core outcome set (COS) for childhood epilepsy research and (2) gain insight into the acceptability of two leading candidate PROMs.

Method

We identified 11 epilepsy-specific PROMs of children's HRQoL (17 questionnaire versions) in a previous systematic review. Each item from the PROMs was mapped to 38 discrete outcomes across 10 domains of the COS: seizures, sleep, social functioning, mental health, cognition, physical functioning, behavior, adverse events, family life, and global quality of life. We consulted with three children with epilepsy and six parents of children with epilepsy

SUBMITTER: Crudgington H 

PROVIDER: S-EPMC7689576 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature