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

Autor: Biondi A; Institute of Psychiatry, Psychology and Neuroscience (IoPPN), King's College London, London, UK. Electronic address: andrea.2.biondi@kcl.ac.uk., Zabler N; Epilepsy Centre, University Medical Centre - University of Freiburg, Freiburg, Germany., Kalousios S; Epilepsy Centre, University Medical Centre - University of Freiburg, Freiburg, Germany., Simblett S; Department of Psychology, Institute of Psychiatry, Psychology & Neuroscience (IoPPN), King's College London, London, United Kingdom., Laiou P; Institute of Psychiatry, Psychology and Neuroscience (IoPPN), King's College London, London, UK., Viana PF; Institute of Psychiatry, Psychology and Neuroscience (IoPPN), King's College London, London, UK; Faculty of Medicine, University of Lisbon, Lisbon, Portugal., Dümpelmann M; Epilepsy Centre, University Medical Centre - University of Freiburg, Freiburg, Germany., Schulze-Bonhage A; Epilepsy Centre, University Medical Centre - University of Freiburg, Freiburg, Germany., Richardson MP; Institute of Psychiatry, Psychology and Neuroscience (IoPPN), King's College London, London, UK.
Jazyk: angličtina
Zdroj: Seizure [Seizure] 2024 Nov; Vol. 122, pp. 119-143. Date of Electronic Publication: 2024 Oct 09.
DOI: 10.1016/j.seizure.2024.10.004
Abstrakt: 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.
Competing Interests: Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: NZ received speaker fees and consulting fees from UCB pharma and reports a grant from DAAD (German Academic Exchange service). ASB reported receiving grants from the German Ministry of Science and Education Project PIMIDES, Precisis Projects EASEE and PIMIDES, Medtronic MORE-registry, and UNEEG Medical. ASB received honoraria for lectures or consulting fees from Angelini Pharma, Bial, Desitin, Eisai, GW Pharmaceuticals, and UCB Pharma. MD reports a grant from DAAD (German Academic Exchange service). P.F.V. has received travel and consultancy fees from UNEEG Medical but declares no nonfinancial competing interests. MPR received speaker fees from UNEEG medical and consulting fees from UNEEG medical and Lundbeck. MPR received funding support from the NIHR Biomedical Research Centre at the South London and Maudsley NHS Foundation Trust. All other authors (AB, SK, SS, PL) declare no conflicts of interest. We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.
(Copyright © 2024 The Author(s). Published by Elsevier Ltd.. All rights reserved.)
Databáze: MEDLINE
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