Patient-reported outcome measures (PROMs) in quality of epilepsy care: A systematic review.

OBJECTIVE

The current lack of an unambiguous and widely applicable quality indicator for epilepsy care could hamper epilepsy care. The main aim of this systematic review is to study patient-reported outcome measures (PROMs) instruments that evaluate the quality of epilepsy care and inventorize the main themes covered as well as the measurement properties of these instruments.

METHODS

The protocol was registered in PROSPERO (ID: CRD42025637902) and reporting followed the PRISMA reporting guidelines for systematic reviews. Electronic databases searches were conducted on PubMed, Embase and Web of Science. Articles published up to 2025 were considered. Dutch or English-language articles with a focus on the development and validation of PROMs to evaluate epilepsy care were included. Reviews, editorials, conference abstracts, protocols and translations were excluded. Covered themes and measuring properties (validity, external reliability, internal reliability and readability) were extracted. Risk of bias assessment was performed using 'Consensus-based Standards for the selection of health measurement instruments' (COSMIN) guidelines.

RESULTS

The search resulted in 1,904 articles. Seven articles met our inclusion criteria, evaluating a total of seven instruments. Recurring themes included seizure control (n = 5), treatment (n = 5), daily life (n = 3), psychosocial functioning (n = 3). Less frequently addressed themes included diagnostics (n = 2), quality of life (n = 2), injury (n = 2), reproductive health (n = 1), sleep (n = 1) and informal caring (n = 1).

SIGNIFICANCE: Most instruments evaluating epilepsy care focus on seizure control and treatment aspects while other domains like daily activities and psychological functioning are less well covered. Including these domains is however advisable as they are important components of QoL.