Current norms and practices in using a seizure diary for managing epilepsy: A scoping review

Background Epilepsy is a chronic and debilitating condition affecting people of all ages in many nations. Healthcare practitioners look for effective ways to track patients’ seizures, and a seizure diary is one of the methods used. This scoping review sought to identify current norms and practices for using seizure diaries to manage epilepsy. Method A scoping review was performed by screening relevant studies and identifying themes, categories and subcategories. Results A total of 1125 articles were identified from the database; 46 full-text articles were assessed for eligibility, of which 23 articles were selected. The majority (48%) of the studies were prospective studies. The majority (65%) of the articles were studies conducted in the United States. The themes identified were types of seizure diaries used in clinical practice, contents and structure of a standardised seizure diary, the use and efficacy of seizure diaries in medicine and challenges relating to using a seizure diary for patient management. Conclusion The study revealed that a seizure diary remains a relevant tool in managing epilepsy. The two forms of diaries in use are electronic and paper-based diaries. The high cost of data and the expensive devices required to access electronic diaries make it unsuitable in a resource-limited setting. Despite its disadvantages, imperfections and inadequacies, the paper-based diary is still relevant for managing patients with epilepsy in resource-limited settings. Contribution This study reviewed the literature to find the current norms and practices in using seizure diaries. The benefits of the different formats were emphasised.


Introduction
https://www.safpj.co.za Open Access self-report in the diary their seizure occurrence, duration of seizures, types of seizures and the day of occurrence of the seizures. Caregivers can also assist with diary entries. 5 Seizure diaries are currently available in two major formats: paper and electronic. The paper-based diary is a basic calendar asking questions about patients' seizure types and frequency, which is the industry standard. 5 Patients can indicate the days of the month they had seizures by circling the dates in the calendar. Alternatively, the electronic diary (e-diary) comes in a digital format that can be uploaded online. It is a more detailed and accurate diary with time-stamped patient entries. Information on patients' seizure types, frequency, duration, triggers, mood, medications and side effects can be logged with graphical reports and tabular summaries available to patients, caregivers and healthcare workers. 5 Electronic-based seizure diaries are the most widely used and are reported to have several potential advantages over paper-based diaries. 5 Despite their reported value in monitoring seizures and managing epilepsy, little information exists about the accuracy or validity of these tools or current norms and practices guiding the use of seizure diaries for managing epilepsy. In the present study, current international norms and practices were examined guiding the use of seizure diaries in the management of epilepsy and their implications for the management of epilepsy in Africa.

Methods
A scoping review was conducted for the purpose of this study in order to explore the breadth of the literature and evidence available on the research topic, to summarise the evidence and to inform future research on the topic. 9 In order to take a structured approach to investigating the current norms and international practices that guide the use of seizure diaries in the management of epilepsy, this review used the five-point framework for data interrogation and analysis proposed by Arksey and O'Malley, namely (1) identify research questions, (2) identify relevant sources or studies, (3) select relevant literature, (4) chart data and (5) collate and analyse the literature. 10 We found no previously published scoping review protocol for this review or the topic of interest. Hence, a protocol was developed for the study.

Identification of research questions
This review aimed to identify a wide range of literature relating to the use of seizure diaries for the management of epilepsy. Based on the initial literature search results, a research question was formulated. The main research question that guided this study is as follows: 'what are the current norms and international practices guiding the use of seizure diaries in the management of epilepsy?'

Identification of relevant sources or studies
An initial search was conducted using Medical Literature Analysis and Retrieval System Online (MEDLINE) and Cumulative Index to Nursing and Allied Health Literature (CINAHL), with the aim of identifying common keywords or phrases in the titles and abstracts of retrieved and relevant articles. Identified keywords or phrases were then used to develop full-search strategies adapted for each information source.  11 Articles were initially screened for inclusion after a quick review of the title and abstracts against the inclusion criteria. If doubt existed regarding its suitability, the article's full text was retrieved and reviewed for possible inclusion. If doubt still existed and reviewers could not reach an agreement, an independent colleague was consulted for deliberation. The first search was conducted on 22 February 2021; this was followed by a serial search every four months for any recent publication on the topic of interest. The last search was conducted on 31 December 2021.

Selection of relevant literature
This scoping review included articles, randomised clinical trials, reviews and conference proceedings published in English since 1981, from any geographical location, as long as it related to the use of seizure diaries for clinical management of epilepsy and seizure monitoring ( Table 1). The concepts of interest were standards for an ideal seizure diary, models or types of seizure diaries currently used in clinical practice, how diaries are being used to manage epilepsy and the efficacy of diaries for patient management. Sources of evidence were quantitative and qualitative research that reported on using diaries or seizure monitoring charts for the management of epilepsy and published in peer-reviewed academic journals and verifiable sites or web pages. A search was made on electronic databases, such as EBSCOhost, Scopus, Cochrane and Web of Science, for published articles and relevant reviews that addressed this study's research question. The inclusion and exclusion criteria are presented in Table 1.
The selection process provided the basis for identifying 1125 potentially relevant sources. After removing duplicate articles (n = 385), the lead author screened the titles and abstracts for eligibility. A total of 694 articles were rejected because of a lack of relevance to the subject. All authors reviewed the remaining 46 articles, and 23 articles were agreed on for inclusion. The selection process is presented in Figure 1.

Charting of data
Each article included in the search was summarised and is presented in Table 2 under the following headings: authors, title of article, journal, author location, research design, sample size and comments relevant to the use of seizure diary.

Ethical considerations
Ethical clearance to conduct the study was obtained from the Health Sciences Research Ethics Committee of the Faculty of Health Sciences at the University of the Free State (ref. no. UFS-HSD2020/1385/2411).

Results
As reported in Table 2, of the 23 articles, almost half (48%; n = 11) were prospective studies (

Themes identified
Identified themes, categories and subcategories are presented in Table 3.

Theme 1: Types of seizure diaries used in clinical practice
The use of patient diaries to assist with clinical management and patient care is a standard practice that has been incorporated into medical practice over the years. 40,41,42 Diaries have been used to document symptoms and factors that may have precipitated the symptoms, patient responses to symptoms, efficacy of treatment response and medication adherence. 40,41,42 Diaries are regarded as the backbone of clinical epilepsy management and therapeutic trials. 5 The findings of the review by Fisher et al. 5 revealed that seizure diaries are available in two formats, namely paper-based diaries and e-diaries.   In a paper-based diary study, seizure prediction based on precipitants, premonitory features and self-prediction may provide a foundation for pre-emptive treatment.
Haut et al. 24 Modeling seizure self-prediction: An e-diary study Illingworth et al. 28 A method for identifying associations between seizures and possible trigger events in adults with intellectual disability

Epilepsia
United Kingdom Prospective study 5 The study's limitation was the unreliability of data collected using a pen-and paper-based diary.
Karoly et al. 29 Are the days of counting seizures numbered?

Category 1.1: Paper-based diary
A paper-based diary is a hard copy document that is used to record information such as patients' seizure types and frequency. 5 This type of seizure diary requires the patient or caregiver to manually write in the required information. A paper-based diary is the preferred choice in a resourcelimited setting where patients have limited access to the Internet or electronic devices. 5,34 Subcategory 1.1.1: Advantages of a paper-based diary: Documented advantages of the paper-based diary are that they are cheaper to create, as they do not require Internet access or expensive devices; it is easier for patients to learn how to use; it is easier to use because it does not require great intellectual capabilities or specialised skills (i.e. computer skills) to complete. 5 In addition, a paper-based diary can be successfully used by a predominantly illiterate community and can easily be made available to patients. 34

Subcategory 1.1.2: Disadvantages of a paper-based diary:
The disadvantages of a paper-based diary include that it can easily be lost, misplaced or not brought along by patients to clinic visits 5,31 and that patient data cannot be backed up or reconstructed if the diary is lost. 5 Paper-based diaries can be completed retrospectively, and it is prone to recall bias, which calls into question the validity of patient-reported data. 28 Written data are difficult to transform into electronic data, making it difficult to visualise trends and relationships between listed factors. 19

Category 1.2: Electronic diary
In contrast to paper-based diaries, an e-diary can be accessed via different online browsers on devices such as computers, laptops and smartphones. 5,41 An e-diary can record more detailed data than a paper-based diary. Among its various features are that programming can improve data validity, real-time transmission of patient information is possible and reminders can be sent to subjects. 5,43 Subcategory 1.2.1: Advantages of an electronic diary: The literature reports several advantages of using an e-diary. An online database serves as a safe storage site for storing patients' information anonymously. 18 An e-diary is not prone to being easily lost or misplaced, 19,31 and data can be made available in graphical or tabular format for easy visualisation of trends. 31 Electronic diaries are easily accessible via handheld devices like smartphones and computers. 5 The e-diary allows for precise time recording; an entry is timestamped and it is difficult to backfill or complete retrospectively. 25 The e-diary can be adapted to prevent information entered into the diary from being edited. 25 An e-diary can be programmed to provide reminders to improve patient compliance. 19 Large online databases to which patients contribute information can serve as a rich data pool for authorised researchers. 5

Subcategory 1.2.2: Disadvantages of an electronic diary:
Reported disadvantages of electronic diaries are that an e-diary requires the user to be technologically proficient and to have access to electronic devices -which patients cannot always afford. 5 It may be difficult to use an e-diary for patients who are children, as it will require a caregiver's input, which may be problematic because of the presence of multiple caregivers. 5 If multiple caregivers have access to the diary, it may compromise patients' privacy. 5

Theme 2: Contents and structure of an ideal seizure diary
While there is little empirical evidence or a theoretical foundation to inform the content of patient diaries, the design and contents of most patient diaries are tailored to achieve the goal of clinical management. 41 In the design of diaries for clinical drug trials, one type of diary will not be appropriate for all clinical studies because of the inconsistency of the questions posed. Trying to predict all possible data will lead to requesting too much information, which may make the diary impractical to use. The best diaries ask only what is needed with an efficient and user-friendly design. 5 The findings of the present study revealed that a standardised seizure diary must contain three vital, basic pieces of information, namely seizure type, seizure frequency and days of seizure occurrence. 5

Category 2.1: Seizure type
The management of epilepsy recognises various seizure types, which may affect different age groups. Children, more than adults, have been reported to present with multiple seizure types. 5 Treatment is often tailored to consider seizure types; hence, accurate description and categorisation of seizure types are important for proper management. To this end, some researchers 5,18,31 consider information on seizure type to be an essential component of a seizure diary. The International League Against Epilepsy (ILAE) provides a detailed operational classification of seizures. 35 Fisher et al. 5 suggested that seizure types may be recorded using codes such as A, B and C to represent different types of seizures known to the diary developers and the patients. 5 Other researchers suggest writing out the common types of seizures in full if the space is available in the diary. 36

Category 2.2: Seizure frequency
Seizure frequency is another important piece of information that must be captured in a seizure diary, as reported by most of the literature reviewed. 5,13,14,16,17,18,20,21,27,31,33 Patients document their seizure occurrence, which can be used in estimating the seizure frequency. The estimation of seizure frequency is a cornerstone of clinical epilepsy management and evaluation of new therapies. 29 Self-reported seizure counts of patients with epilepsy guide treatment decisions and are often the primary outcome measure of clinical trials in epilepsy. 14,27 Patients' medication dosages and clinic visit frequency are adjusted according to the trends of patientreported seizure frequencies. 33 Some scholars 16,18 reported that information on seizure frequency could be used to identify seizure clusters. 37 Karoly et al. 29 reported that seizure counts remain the primary way of quantifying patients' epilepsy. Seizure counting does not require specialised equipment or tests and is entrusted to patients or caregivers, commonly using a seizure diary. 29

Category 2.3: Days of seizure occurrence
Days of seizure occurrence is one of the three most important pieces of information that must be captured in a standardised seizure diary. 5,18,19,30,31 Researchers suggest that a seizure diary must contain a suitable calendar for charting days with seizures in order to eliminate patient recall bias. 5,18,19,30,31 Calendars are available as hard copy (paper-based diary) or electronic calendars (e-diary). Several events can be recorded on a calendar diary, such as seizures, mood, menstruation, medications and side effects, by day or time of day. 18,19

Category 2.4: Other information
Additional information that can be recorded in the seizure diary includes seizure duration, time of seizure, seizure triggers, seizure clustering, medication regimens, missed medications, medication side effects and patient mood. A seizure diary may include the duration of seizures as additional information provided by the user of the diary and caregiver. Authors of the reviewed literature 5,17,18,31 described seizure duration as additional information that could be provided by users as part of patient history. Prolonged seizure duration increases the risk of progression to status epilepticus, which has been reported to account for increased morbidity and mortality of patients with epilepsy. 44 Time of the seizure can be recorded in a seizure diary. 13,14,18,19,27,31 Seizures can occur in the daytime or at night. Night-time seizures are more likely to be undocumented by patients because of unawareness. 13,27 Seizure triggers are additional information that can be recorded in the seizure diary. 5,18,31 Some patients are familiar with events that may trigger their seizures, but it is common for a patient not to know what triggered a seizure. Successfully identifying triggers can help decrease seizure frequency in patients. Some authors of the reviewed literature reported using a seizure diary to monitor common seizure triggers. 16,17,23,24,25,26 Stressful life events, mood changes, missed or changed medications, altered sleep, alcohol consumption, menstruation, anxiety, bright or flashing lights and constipation are some of the seizure precipitants commonly reported in the literature. 17,18,22,25,28,30,31 Seizure clusters are patterns of seizures that occur multiple times a day, 18 although there is no consensus on the definition of seizure clusters. 18,37 Detyniecki et al. 16 defined seizure clusters as two or more seizures in 6 h, while Haut et al. 38 used an alternative definition, defining seizure clusters as three or more seizures in any given 24-h period. Fisher and colleagues reported that seizure clusters are additional information that can be ascertained from recorded data in a seizure diary. 5,19 Diary data that include seizure time from online electronic seizure diaries, such as Nile (Nile AI, Inc., Los Angeles, California, United States) and Seizure Tracker (Seizure Tracker LLC, Springfield, Virginia, United States), are used to identify repetitive seizure patterns that signify clusters in patients with epilepsy. 17,18 People with high daily seizure counts are likely to experience clusters every day. 18 Medication regimens can be recorded as additional details in seizure diaries. 5,18 The 'best dose' of medication is the one that controls seizures and is associated with the least side effects. 43 Information on other chronic medications used for medical conditions apart from epilepsy may be vital in order to avoid medication errors because of drug-drug interactions. 45 Information on medication adherence is important for seizure control, and daily diary inputs may act as reminders to promote medication adherence. 23 Ernst et al. 7 found seizure diaries to be helpful in tracking patients' medication adherence in a subset of women with epilepsy who were planning pregnancy. Some electronic diaries allow users to document their medication names and doses; users can also indicate if they missed medications or took extra doses. 18,19 Theme 3: The use and efficacy of seizure diaries in medicine Information synthesised from the reviewed literature reveals that seizure diaries are used in two major forms: clinical practice and research.

Category 3.1: Using seizure diaries in clinical practice
A seizure diary is a self-management tool for patients living with epilepsy. 8,39 Some researchers 13,14 reported on using paper-based diaries for the clinical management of patients with epilepsy. Although prone to recall and response bias, a basic paper-based diary can provide a history of a patient's seizure types, seizure frequency and the calendar dates of seizure occurrence. 5 The use of seizure diaries in predicting seizures was reported by six researchers. 21,22,23,24,25,26 Haut et al., 25 in a study using the e-diary, reported that changes in mood such as happiness, sadness and nervousness and premonitory features such as blurred vision, dizziness and light sensitivity contribute to the prediction of seizures over 12 h. In another study using an electronic diary, Haut et al. 24 reported that 9 of 19 (43%) participants with epilepsy were able to accurately predict their seizures, drawing on awareness of mood and premonitory symptoms.

Category 3.2: Using seizure diaries for clinical research
Diaries can be used for clinical research; almost all the studies reviewed commented on the use of seizure diaries for clinical research. 7,16,17,21,22,24,25,26,27,30,31 Seizure diaries could be used in investigator-supervised research, such as randomised controlled trials of novel epilepsy therapies, prospective observational studies, or unsupervised studies, such as ad hoc analysis of self-reported anonymous diaries. 31 Longitudinal data entered into seizure diaries can be used to make observations, and observational data can be used to generate hypotheses to be tested in clinical trials. 19 In addition, information such as demographic data, seizure types, seizure precipitants and medication usage that is captured in diary-based studies can be used to develop descriptive snapshots of the population. 31 Theme 4: Challenges related to using seizure diaries for patient management

Category 4.1: Patients' compliance
Compliance means to adhere to something; clinicians expect patients to comply regarding diary use. In this scoping review, we found that compliance was often discussed as one of the major challenges relating to the use of seizure diaries for patient management. 7,13,14,16,19,20,22,23,24,26,27 Nevertheless, patient-reported compliance was high in most of the literature reviewed. Blachut et al. 13 stated that the majority of patients in their study reported keeping a seizure diary, most keeping the diary themselves, and in some cases, patients were assisted. The high level of compliance documented by these studies may be the result of various strategies used by the researchers to enhance compliance. Documented strategies to enhance patient compliance include sending electronic reminders 7,16,20,24,27 and training patients on how to use the diary. 23,25,28 Despite these strategies, Hoppe et al. 27 reported that in their study, reminding participants did not enhance seizure documentation. 27 It is also reported that severe epilepsy, such as drug-resistant seizures and increased seizure frequency, could enhance compliance with diary use as opposed to patients with well-controlled epilepsy who may have little motivation to utilise the diary. 17,31 Keeping a seizure diary empowers the patient to be actively involved in controlling their health. Maintaining a diary may help improve compliance with treatment. 7 Blachut et al. 14 stated that patients are compliant with documentation if they feel it is important for monitoring their disease and may affect their treatment.
Furthermore, healthcare practitioners' interest in the patients' seizure diary has been suggested to improve patient compliance with diary use. Blachut et al. 13 reported a strong positive correlation between patients' commitment to seizure documentation and doctors' behaviour. Doctors taking time to review the diary reinforced positive diary behaviour by patients, 13 which should be encouraged to improve patient compliance.

Category 4.2: Reliability of data on patient-reported seizures
Data on seizures, self-reported using either paper-based or electronic diaries, have long been relied upon in clinical drug trials and clinical management of patients with epilepsy. The accuracy of subjective self-reporting continues to be debated. 23 Thirteen of the studies reviewed described the accuracy of patient-reported seizures as being a limitation in their studies. 13,14,16,18,28 Some researchers suggested that inaccuracies in seizure reporting were because of patients' inability to recognise their seizures (seizure unawareness), which leads to underreporting. 13,14,27 Poochikian-Sarkissian et al. 33 reported that patients in their study recognised only 44.5% of complex partial seizures and generalised tonic-clone seizures, thus leading to questions about the reliability of patients' diaryreported seizures. These findings are supported by other researchers. 46,47 Patients also complete their diaries retrospectively, thus affecting the reliability of the data. 7,23 In contrast, three of the studies reviewed found patients' self-reported seizure estimates to be reliable and relevant. 15,20,32 Glueckauf et al. 20 evaluated the consistency of seizure frequency estimates among patients and caregivers. The study reported that patients provide more reliable seizure frequency estimates than caregivers. Neugebauer 32 reported that using the diary in clinical settings still enjoys high reliability in dedicated patients. Corey et al. 15 reported that the accuracy of self-reporting of epilepsy and febrile seizures was high among patients providing health histories in all population groups studied. Detynieki et al. 16 reported that following up paper-based diary patients, collecting and reviewing the diary at regular intervals (electronic diaries being reviewed on a monthly basis) and comparing the provided information with diary entries help ensure the accuracy of data. However, most researchers described selfreported diaries as being inaccurate and unreliable. Karoly et al. 29 stated that using video electroencephalogram (EEG) is a more accurate and modern technique of monitoring and reporting seizures. However, this technique may not be suitable for all patients and clinics because of affordability.
Patients are less likely to accept a more invasive monitoring technique in exchange for more accurate information.

Category 4.3: Validity of data on patient-reported seizures
Subjective data reflect patients' reported perspectives via their seizure diaries, while objective data reflect verifiable facts using clinical events correlated to electrographic seizures. 29 Seizures can be verified using video EEG, ambulatory EEG, implantable recording devices, smartwatches and other modern devices. 5,36,48,49 Researchers reported that patient-reported seizure diary data are subjective and not verifiable. 7,14,17,22,23 Patient-reported, subjective data are prone to inaccuracies and being unreliable. Some of the difficulties experienced in using objective methods in validating seizure diary data, as reported by some researchers, include problems with electrode placement, the high cost of EEG equipment, safety concerns and practical difficulties. 20,28 Despite these difficulties, some studies reviewed validated diary data. 15,21,27,33 These authors reported that combining diary data with EEG readings can help validate diary data.

Limitations
A limitation of this study is the paucity of literature on the use of the seizure diary in epilepsy management in lowincome countries of the world in general and the African continent in particular. More information would have enabled the documentation of trends in the use of seizure diaries in managing epilepsy in a resource-poor setting.

Conclusion
This scoping review showed that seizure diaries remain relevant for epilepsy management in a resource-poor setting where modern devices for objective detection and recording of seizures are unaffordable. Without feasible alternatives, affordable seizure diaries are essential for monitoring epilepsy in a resource-poor setting, despite its challenges. Electronic-and paper-based diaries are the two forms of diaries in use. The high cost of data and the expense of devices required to access an e-diary make this form unsuitable for resource-limited settings. 48,49,50 Patient compliance and the reliability and validity of patientreported data are some of the challenges associated with the use of seizure diaries in clinical practice. Training patients to use the seizure diary, encouraging them to complete the diary as soon as possible after a seizure and motivating them to use the diary to keep track of seizures, which influences their treatment, may help improve the use of the seizure diary.