Exploring the prevalence and profile of epilepsy across Europe using a standard retrospective chart review: Challenges and opportunities.
Christine LinehanAilbhe BensonAlex GunkoJakob ChristensenYuelian SunTorbjörn TomsonAnthony MarsonLars ForsgrenEugen TrinkaCatrinel IliescuJulie Althoehn SonderupJulie Werenberg DreierCarmen SanduMadalina LeancaLucas RainerTeia KobulashviliClaudia A GranbichlerNorman DelantyColin DohertyAnthony StainesAmre Shahwannull nullPublished in: Epilepsia (2021)
Although a precise prevalence estimate could not be generated from these data, the study found a high validity of epilepsy classification among evaluated cases (95.9%). More generally, this study highlights the significant challenges facing epidemiological research methodologies that are reliant on patient consent and retrospective chart review, largely due to the introduction of data protection legislation during the study period. Documentation of the epilepsy diagnosis was, in some cases, relatively low, indicating a need for improved guidelines for assessment, follow-up, and documentation. This study highlights the need to address the concerns and requirements of recruitment sites to engage in epidemiological research.