Use of an electronic seizure diary in a randomized, controlled trial of natalizumab in adult participants with drug-resistant focal epilepsy

Patel, Jagdish; Feng, Weiwei; Chen, Kun; French, Jacqueline A.; Rushton, M. L.; Hubbard, Susan M.; Ren, Zheng; Potero, Ed; Parkerson, Kimberly A.

doi:10.1016/j.yebeh.2021.107925

Cited by 8 publications

(4 citation statements)

References 11 publications

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“…This technology might be useful for clinical and research purposes, serving as a patient-reported outcome and aiding in the evaluation of medication. Specifically in therapeutic trials, research has already shown that high app-based diary compliance can be achieved 41 .…”

Section: Discussionmentioning

confidence: 99%

High precision in epileptic seizure self-reporting with an app diary

Zabler,

Swinnen,

Biondi

et al. 2024

Sci Rep

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People with epilepsy frequently under- or inaccurately report their seizures, which poses a challenge for evaluating their treatment. The introduction of epilepsy health apps provides a novel approach that could improve seizure documentation. This study assessed the documentation performance of an app-based seizure diary and a conventional paper seizure diary. At two tertiary epilepsy centers patients were asked to use one of two offered methods to report their seizures (paper or app diary) during their stay in the epilepsy monitoring unit. The performances of both methods were assessed based on the gold standard of video-EEG annotations. In total 89 adults (54 paper and 35 app users) with focal epilepsy were included in the analysis, of which 58 (33 paper and 25 app users) experienced at least one seizure and made at least one seizure diary entry. We observed a high precision of 85.7% for the app group, whereas the paper group’s precision was lower due to overreporting (66.9%). Sensitivity was similar for both methods. Our findings imply that performance of seizure self-reporting is patient-dependent but is more precise for patients who are willing to use digital apps. This may be relevant for treatment decisions and future clinical trial design.

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Section: Discussionmentioning

confidence: 99%

High precision in epileptic seizure self-reporting with an app diary

Zabler,

Swinnen,

Biondi

et al. 2024

Sci Rep

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“…A 2011 study found the majority of online diary users were younger, suggesting computer literacy to be relevant to diary compliance [13]. However, a more recent 2021 study on using electronic seizure diaries found no significant differences in diary compliance across age groups [14]. Compared with 10 years ago, computer literacy now may be more universal and less of a barrier to seizure diary use, especially after the COVID‐19 pandemic, when many were forced to become computer literate, including for medical appointments.…”

Section: Discussionmentioning

confidence: 99%

Electronic seizure diaries for clinical care and research

Gray¹,

Hirsch²,

Quraishi³

2022

Epileptic Disorders

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Objective. People with epilepsy often record their seizures in diaries. While seizure diaries can be kept using paper and digital notes or calendars, electronic seizure diary services are available on web browsers and mobile apps. Benefits of these electronic diaries include standardized data collection, data backup and protection, long-term trending, and data accessibility to providers or research groups. The major electronic seizure diary services have not recently been systematically evaluated or compared. Methods. We evaluated nine electronic seizure diaries selected based on popularity and prevalence in the literature. Diaries were tested from both the user and provider perspectives. Results. A review of nine commonly used seizure diary services that we could identify showed variability in features offered. All services provide a seizure log with inputs for date and seizure type along with a combination of other features such as duration, intensity, trigger, recovery, mood, and description. Other notable features included in some, but not all diary services are: the ability to track medications, missed doses, sleep, menstrual cycles, and other possible triggers; provider accounts to share data; the ability to report clusters and seizure severity; an option for medication reminders; user-friendly trending of long-term data in relation to changes in treatment; and the ability to export data for research. Significance. Having electronic diaries that allow patients to log seizures quickly and accurately can improve the quantity and quality of data, which can be used both for clinical and research benefit.

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“…The use of a mobile health system for epilepsy significantly aids in the self-management of the condition. Employing an electronic seizure diary helps mitigate errors in recalling the number of seizures due to amnesia [19,62]. Another advantage of utilizing a mobile health system for epilepsy patients is that it assists them in remembering when to take their medication, thereby improving compliance and patients' knowledge about their treatment [15,16].…”

Section: Limitations and Conclusionmentioning

confidence: 99%

Effect of Mobile Health Applications on Improving Self-Management Knowledge and Seizure Control in Epilepsy Patients: A Scoping Review

Ernawati,

Yasin,

Setyopranoto

et al. 2024

Healthc Inform Res

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Objectives: Mobile health app-based interventions are increasingly being developed to support chronic disease management, particularly for epilepsy patients. These interventions focus on managing stress, monitoring drug side effects, providing education, and promoting adherence to medication regimens. Therefore, this scoping review aims to assess how mobile health applications improve epilepsy patients’ knowledge and seizure control, and to identify the features of these apps that are frequently used and have proven to be beneficial.Methods: This scoping review was conducted using scientific databases such as ScienceDirect, PubMed, and Google Scholar, adhering to the Joanna Briggs Institute guidelines. The review framework consisted of five steps: identifying research questions, finding relevant articles, selecting articles, presenting data, and compiling the results. The literature search included all original articles published in English from 2013 to 2023.Results: Among six articles that discussed mobile applications for epilepsy patients, all featured similar functionalities, including education on epilepsy management and seizure monitoring. Four of the articles highlighted behavioral interventions, such as reminder systems, designed to improve medication adherence. The remaining two articles focused on a side-effect reporting system that enabled doctors or health workers to evaluate and regularly monitor adverse effects.Conclusions: This scoping review reveals that mobile health applications employing a combination of educational and behavioral interventions for epilepsy patients significantly improve knowledge about patient self-management and medication adherence. These interventions can prevent seizures, increase awareness, enable better activity planning, improve safety, and reduce the frequency of seizures and side effects of antiepileptic drugs.

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Use of an electronic seizure diary in a randomized, controlled trial of natalizumab in adult participants with drug-resistant focal epilepsy

Cited by 8 publications

References 11 publications

High precision in epileptic seizure self-reporting with an app diary

High precision in epileptic seizure self-reporting with an app diary

Electronic seizure diaries for clinical care and research

Effect of Mobile Health Applications on Improving Self-Management Knowledge and Seizure Control in Epilepsy Patients: A Scoping Review

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