What matters most to people living with epilepsy? A rapid review of qualitative research relating to health outcomes

Abstract At present, the outcomes measured and reported in clinical trials for adults with epilepsy are heterogenous and have often not been selected in consultation with people living with epilepsy. As part of a wider project developing a core outcome set for clinical trials for adults with epilepsy (the EPSET Project), a rapid review of the published qualitative literature was performed. MEDLINE was searched using an established qualitative methodological search filter to identify studies discussing the views of adults with epilepsy and their representatives. Eligible articles included published free‐text verbatim quotations from adults with epilepsy or their representatives discussing potential health outcomes. Data were coded and categorized in line with an established health outcome taxonomy. A total of 614 eligible articles were identified, of which 74 were included as they met the inclusion criteria. In total, the views of more than 2474 adults with epilepsy and 658 caregivers were included from six continents. Of the included studies, 77% used in‐depth interviews and 12% used focus groups. A total of 140 individual health outcomes were identified in the included studies across nine outcome domains: seizure‐related, cognitive–behavioral–neuropsychological, physical functioning–disability, emotional functioning, social role functioning, global quality of life, side effects and adverse events, fertility–pregnancy–offspring, and death. This is the first review of qualitative studies focusing on health outcomes for adults with epilepsy. The findings confirm that living with epilepsy represents more than living with seizures and highlight the impact of neuropsychiatric symptoms in these populations. Importantly, many outcomes identified from this review are not measured and reported in studies assessing the effectiveness and safety of treatments for epilepsy, supporting the development of a lived experience‐informed core outcome set for future effectiveness studies. Furthermore, the findings could be used to inform clinical practice and noninterventional studies across broad geographic, societal, and cultural settings.