Accurate measurement and detailed understanding of a person’s seizures are key elements in the diagnosis, classification, and treatment of epilepsy. The use of electroencephalography (EEG) for this purpose is well established [1]; however, routine EEG recordings often do not capture epileptiform activity or seizures as patients can have a low frequency of epileptic activity [2]. Long-term video-EEG monitoring is used to optimize treatment, but can cost thousands of dollars to conduct, requires patients to spend days in the hospital, and might not capture the semiology of everyday life seizures [3-5]. This is particularly a problem for patients with comorbidities, such as intellectual or developmental disabilities (IDD), for whom diagnosis can be more difficult and hospital-based monitoring intolerable [6]. This population remains underrepresented in research [7] and there is a lack of data on misdiagnosis relating to epilepsy in people with IDD [8]. This highlights a clear need for remote EEG monitoring systems, which have the potential to provide a less disruptive means of gathering objective seizure data, without relying on patient or observer reports of seizures.

A variety of monitors and alarms are available to support at-home monitoring of epilepsy and seizure detection [9] (Table 1) and some previous reviews have been conducted in this field [10-13]. One review found that the devices available on the market focused primarily on monitoring non-EEG signals [10]; however, studies of implantable devices were excluded from all of the reviews [10-13]. Three of the reviews also reported a need for further evidence of the clinical effectiveness and usability of the at-home seizure monitoring systems assessed but concluded that the systems did have potential to provide clinically useful data, be acceptable to patients, and empower patient self-monitoring and self-management [10-12]. However, none of these reviews provided an overview of remote EEG monitoring devices for adults with epilepsy and a search of PROSPERO (International Prospective Register of Systematic Reviews) using the terms (epilepsy AND remote EEG monitoring) did not find any reviews in progress on this topic. This demonstrates the need for a comprehensive overview of the different means of conducting remote EEG recordings that are being developed and evaluated for people with epilepsy.

No published or in progress reviews were identified that focused on adults with epilepsy and IDD. Given the potential value of remote EEG monitoring for all people with epilepsy, but particularly people with epilepsy and IDD, an overview of the devices being developed to deliver remote EEG monitoring is needed. This review will include studies evaluating remote monitoring interventions in any adults with epilepsy; however, effort will be made to identify studies in the population of adults with epilepsy and IDD, and they will be highlighted in the analysis. This scoping review will summarize the state of the field of all remote EEG monitoring interventions for adults with epilepsy, the strengths and weaknesses of the interventions and the studies evaluating them, and gaps in the literature. An overview of the current state of the literature and the gaps can be used to inform future directions for research and development.

The aim of this scoping review is to identify and summarize the current state of the literature on remote EEG monitoring interventions for adults with epilepsy. This review will be based on the following research question: What interventions are being evaluated and delivered to enable out-of-hospital EEG monitoring of epileptic seizures in adults, particularly those with IDD?

The PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews; Multimedia Appendix 1) [21] and Population, Intervention, Comparator, Outcome, and Study (PICOS) frameworks [22] were used to build the search strategy (Table 2) and provide a framework for the review.

This review will search 6 databases to identify potentially relevant references: PubMed, MEDLINE, Embase, CINAHL, Web of Science, and ClinicalTrials.gov. A preliminary review of the literature identified relevant Medical Subject Headings (MeSH) terms and keywords, which were grouped into three themes to structure the search (Table 3). They will be strung together in the following way when searching the databases: population (MeSH OR keywords) AND epilepsy (MeSH OR keywords) AND remote EEG monitoring (MeSH OR keywords). Multimedia Appendix 2 provides a sample search string and the number of results returned in PubMed and Web of Science.

All adults (≥18 years old) with epilepsy will be included to ensure that there is good coverage of the literature, but studies with participants with IDD and epilepsy will be identified and analyzed independently as well. Interventions will be included given that they support at-home EEG monitoring of epileptic seizures; this can be as a wearable device or an implant. No comparator is required and all study types will be eligible for inclusion, given that they are evaluating such an intervention (at any stage).

Any studies focusing on pediatric populations or evaluating remote monitoring interventions for epilepsy that do not use EEG (including electronic seizure diaries, motion sensors, and video monitors) will be excluded. Studies that do not evaluate the intervention (such as protocols, reviews, and abstracts without full texts available) and any duplicates will also be excluded. Studies that are not published in English after 2011 will not be eligible for inclusion.

The references will be stored, and duplicates removed, using the citation management software EndNote X9 (Clarivate). The EndNote X9 search function will also be used to conduct an initial screening of the references based on keywords from the search strategy. The included studies in any relevant reviews identified in the screening will be hand searched to make sure that no studies fitting the inclusion criteria were missed in the original search. If any relevant studies are identified, they will be added to the list for full-text review. The titles and abstracts will be screened, and a full-text review conducted, by one of the authors (MMI) to determine final eligibility. A second reviewer will independently validate the title and abstract screening and full-text selection.

Two reviewers will extract data from the included studies into a predeveloped form (Table 4).

The primary aim of this scoping review is to provide an overview of the state of the literature, so the analysis will focus on describing the research being conducted, the strengths and weaknesses of the included studies, and key implications and considerations for future research. Specific analyses relating to the interventions will depend on the types of data collected by the included studies. For example, thematic analysis will be conducted to provide an overview of qualitative data relating to acceptability (ie, patient experiences, clinical acceptability, concerns) and quantitative data about seizure detection will be summarized by providing a breakdown of main findings by the type of intervention.

The analysis will also identify any studies that include or focus on patients with IDD. These studies will be examined separately to identify any unique challenges, considerations, or impacts of the remote EEG monitoring interventions in this population. The data will be analyzed in the same way as the general analysis to enable comparison between population groups, enabling any potential differences between patients with IDD and patients without to be identified. This could include differences in study outcomes (findings relating to seizure detection, acceptability, and patient perceptions) as well as study designs, strengths, and weaknesses. The purpose of this exploratory analysis is to identify areas for further investigation and to inform the design of future studies of adults with epilepsy and IDD.