The value of self-reported variables in epilepsy monitoring and management. A systematic scoping review

Purpose: Self-reported records of seizure occurrences, seizure triggers and prodromal symptoms via paper or electronic tools are essential components of epilepsy management. Despite recent studies indicating that this information could hold important clinical value, the adoption of self-reported information in clinical practice is inconsistent and of uncertain value. Methods: We performed a systematic scoping review of the literature following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. A combination of different digital libraries was used (Embase, MEDLINE, Global Health, PsycINFO). The review examined acceptability, adherence, and ability to self-report or predict seizures, along with innovative applications of self-reported data. We comprehensively outline study characteristics, key results, and identified strengths and limitations. Results: Sixty-eight full-text and two abstracts were included, where a total of 10 electronic tools were identified. Studies revealed high patient interest and acceptable adherence, particularly when tools were well-designed, and data shared with healthcare providers. While patients faced challenges in self-reporting or predicting seizures, a subgroup exhibited higher accuracy and compliance. Studies underscored the value of self-report information in identifying seizure clusters, understanding associations between self-reported seizure frequency and triggers, developing personalized seizure risk, forecasting and prediction models, and the potential benefits when integrated with wearable or implantable devices. Limitations included population selection, repeated dataset use, and the absence of gold standards for seizure counting. Conclusion: Personalizing tools to collect self-report information, integrating them with wearable technologies, utilizing collected data for clinical outcomes, and merging them with electronic health records could provide a reliable resource for epilepsy monitoring and management.