Health-related quality of life and unmet needs of people with epilepsy and their family caregivers: A systematic scoping review

INTRODUCTION: People with epilepsy can experience limitations in their everyday lives due to their condition, impacting on health-related quality of life (HRQOL). We synthesized evidence on HRQOL and unmet needs in adult people with epilepsy and their family caregivers to provide a comprehensive overview of the impact of epilepsy and to identify opportunities for healthcare service improvements.

METHODS: Systematic literature searches were conducted in CINAHL, Embase, Ovid MEDLINE, APA PsychInfo, Scopus, and grey literature databases (12 August 2024). Articles with primary quantitative, qualitative, or mixed methods data covering HRQOL outcomes or unmet needs of adults with epilepsy, their family caregivers, or healthcare professionals as proxies were included. A reflexive thematic framework analysis approach was taken to interpret findings.

RESULTS: Searches yielded 5451 unique publications of which 139 were included. Most publications covered only quantitative data (n = 97, 69.8 %) and utilized a cross-sectional design (n = 121, 87.1 %). All domains of HRQOL (physical, cognitive, emotional/mental, social, and spiritual functioning) were impacted by epilepsy, and intercorrelated. High seizure burden and low socioeconomic status were consistently linked to poor HRQOL outcomes. Adverse HRQOL outcomes were related to high levels of illness intrusiveness, uncertainty, and low levels of perceived control. Caregiver burden was notable. People with epilepsy reported a range of information, healthcare communication, psycho-social and lifestyle, and education/vocational needs.

DISCUSSION: Epilepsy impacts patient and caregiver HRQOL outcomes, highlighting profound illness intrusiveness. Addressing unmet needs may enhance clinical care and empower people with epilepsy and their caregivers to better cope with their condition, improving HRQOL.

REGISTRATION: INPLASY202510047.