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 resource-limited 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

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 time-stamped 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

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

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 patient-reported 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

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

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

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.^5,19 A paper-based diary can be used as a source of patient information that is useful when patients migrate to other locations or when a lack of continuity regarding healthcare providers causes patients to see a different doctor every time they visit a clinic. Electronic diaries are online applications for patients living with epilepsy.³⁹ Examples of popular web-based diaries include Nile (formerly My Seizure Diary, available at https://www.epilepsy.com/)³⁹ and Seizure Tracker (available at https://seizuretracker.com/).^17,36 Both diaries allow patients and caregivers to log seizures of different types, medication dosages, events by time, seizure duration, missed medication, additional medication and medication side effects, and they provide graphical and tabular summaries of information that can be assessed by a medical team via the physician portal or e-mail, if permitted.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.

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

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.

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’ diary-reported 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. Neugebauer³² 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 self-reported 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.

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.