Julia Pitsiaeli, Year 2 Research
Abstract
For people with epilepsy, tracking the condition is crucial to improve quality of life. However, most epilepsy management apps only have general settings, or are too technically complicated, impairing documentation and communication between patients and healthcare providers. Furthermore, there is a gap in the literature concerning which features of seizure-tracking apps are useful for users. In this study, a pre-interview and a post-questionnaire were administered to people with epilepsy or those involved in their care. The pre-interview assessed user preferences of an epilepsy-tracking app, informing the app’s design. The post-questionnaire took place after participants tested the app, assessing whether the app met their needs. The research showed that people with epilepsy and their carers look for a range of features in an epilepsy-tracking app, with seizure tracking, trigger tracking, and medication recording ranking highest. The prototype app was highly rated by participants, covering many of the most highly rated features.
Introduction
Seizures represent clinical manifestations of abnormal and excessive excitation and synchronization of a population of cortical neurons, while epilepsy is defined as a tendency toward recurrent seizures (Moshé et al, 2015). Epilepsy affects over 50 million people worldwide, making it one of the most prevalent neurological disorders (WHO). Epilepsy is a spectrum disorder, ranging in severity of seizures (WHO). People with epilepsy (PWE) can have various types of seizures, including generalized and focal seizures, along with long-lasting symptoms such as migraines, impaired focus, and depression (Epilepsy). Epilepsy can be managed with anti-seizure medications, lifestyle modifications, and, in severe cases, surgery (Mayo Foundation for Medical Education and Research).
Over recent years, phone applications developed for mental and physical health, called mobile health apps (mHealth), have been growing increasingly popular (Vaghefi and Tulu, 2019). There are over 319,000 mHealth apps available for download on popular app store platforms (Wasil et al, 2021). Many mHealth apps focus on improving quality of life for those with mental or physical conditions, with apps such as BlueStar and MangoHealth designed for people with diabetes and chronic pain, respectively (Cervoni, 2021).
Due to epilepsy’s highly variable nature, many mHealth apps intended for PWE are not sufficient, as they are too specialized (Moshé et al, 2015). Apps such as Seizure Tracker and Epilepsy Journal require an assumed severity of epilepsy to be most effective, aimed at PWE at the extreme ends of the epilepsy spectrum. Furthermore, the key to mHealth apps is being user-friendly. Many current mHealth epilepsy apps on the market do not have an effective user interface (UI) (Escoffery et al, 2018). Several UI features such as icons, drop down menus, and an easy-to-understand layout can enhance the user experience (Woldeyohannes and Ngwenyama, 2017). These features are absent in apps such as Seizure Tracker, in which the UI is difficult to navigate and use.
The current mHealth epilepsy app market highlights that features such as seizure tracking, graphing and sharing capabilities are most useful for end-users. However, many current mHealth epilepsy apps focus on one specific aspect of tracking epilepsy, such as medication, seizures or other symptoms. The purpose of this study is to identify the features of an epilepsy disorder tracking mHealth app that would be most useful to help PWE and their carers manage their epilepsy condition, and to create a mHealth app with these features.
Materials and Methods
In this study, convenience sampling was employed to contact PWE and their carers. Participants were asked to attend an online interview (pre-interview) to determine which aspects of an epilepsy tracking mHealth app they would find most useful. All six participants were female, including one PWE, four parents of PWE, and one partner of a PWE. Each of the six participants was asked to read and sign an informed consent form (Appendix A) prior to the structured pre-interview. Information such as demographics, diagnosis, and relationship to the PWE was recorded. The themes covered in the pre-interview included technology/app comfort level, current method of recording and documenting epilepsy, the drawbacks and benefits of these methods, and desired features ranked on a Likert scale from one to five. The list of questions can be found in Appendix B. After the app was designed and implemented, participants were asked to use it as their primary method of tracking their condition for one week. After reading and signing an informed consent form (Appendix C), participants downloaded the prototype app using a secure download link. At the end of the trial period, participants completed a questionnaire about their experiences (Appendix D), indicating preferred features, additional features, and ratings.
The app was designed and built using Thunkable based on the pre-interview. The app’s logo was created using Canva. Extensions through Firebase and Cloudinary were also used to enhance user-controls for login, data protection, and transfer of files. Google extensions were used to create notification systems through Google Calendar, Sheets and Coding Centre. The app was tested regularly for bugs and errors. The prototype app was published as a private downloadable APK file. The app took over 120 hours to design, build and publish.
Results
Through the pre-interview, the most useful features of a seizure-tracking/epilepsy app were identified. The pre-interview revealed that 83.3% of the participants track their disorder with a variety of methods, shown in Figure 1.
Figure 1: Breakdown of methods of tracking epilepsy
Out of 6 participants, 20% use an app, 40% use an electronic notepad, and 40% use a physical notepad. Participants using a physical or electronic notepad cited customizability of their current method as a benefit but noted the drawbacks of using a physical notepad included data organization and transportation difficulties. Those using an electronic notepad found phone storage and data organization to be problematic, and participants using an app cited a lack of customizability as a drawback. The ability to graph or chart information (66.7%), a record of current medications (66.7%), ease of use (66.7%) and customizability (50%) ranked highest when participants were asked which features would be most useful to them. All participants indicated that they would be very likely (5) to try a seizure tracking app.
Participants then ranked prospective app features using a Likert scale, with 0 representing an undesirable feature and 5 representing a highly desirable feature.
Figure 2: Mean & mode of each feature
The app features achieved scores ranging from a mean of 2.5 to 5 out of 5 (Figure 2). As seen in figure 2, participants ranked a seizure recorder highest, with a 5 out of 5 mean rating and ranked sharability and appointment reminders at 4.83, while charts and graphs, a symptom recorder and mental health check-in were rated highly at 4.67. Only one feature, the menstrual reminder, achieved a score below 3 (Figure 2).
After the app was built, participants who trialed the app completed a questionnaire.
Figure 3: Most and least used features
As seen in Figure 3, the most frequently used features were the manual seizure input, manual symptom/trigger input, medication storage, external links to educational resources and using notifications, while the least frequently used features were video-recording seizures, manually inputting seizures, symptoms and triggers, using contacts and updating personal and medical information. Participants also trialed all of the features of the app except for “contacts.” The three most important features of any epilepsy app determined to be medication reminders (taking medication and refilling prescriptions) (100%), a menstrual tracker (100%) and easy-to-input (100%). Compared with their current method of tracking seizures, the app was rated an average of 80% or better, and participants rated the ease of use 8.5/10 on average. Participants did not experience any technological problems and all participants indicated that an instructional video showing how to navigate the app would be useful. On average, participants rated their likelihood to recommend the app at 8.5/10 and gave it an average 9/10 (4.5 stars) overall rating.
Discussion
The purpose of this study was to identify which features of an mHealth epilepsy tracking app would be the most useful for PWE and their carers. It was shown that PWE and their carers highly rated a diverse range of features, ranking the following features as roughly equally important: seizure tracker, symptom tracker, medication reminder, mental health check-in, appointment reminder, charts and graphs and sharability. However, the menstrual tracker was not identified as an important feature. Based on the interviews, PWE value having control over tracking many elements of their condition, including seizures, symptoms and triggers, medical information and prescriptions. After implementing these features into the prototype app and trialing it, participants ranked the importance of the following features as similarly important: seizure tracker, symptom tracker, medication reminder, appointment reminder and sharability. This demonstrated that in order to track epilepsy, users require a variety of features rather than features that focus on one specific aspect of epilepsy, as many current apps do.
However, because the sample size for each study was small (six participants in the interview and two participants in the trial), further research with larger sample sizes is required to obtain generalized data. A variety of participants were chosen to reflect diverse populations that could use the app. Although these participants each had different experiences of epilepsy, a larger sample size is required to achieve greater generalizability. Furthermore, the participants were solely Caucasian and Hispanic women. Thus, larger samples with a balance between men and women and BIPOC participants would provide more globally sufficient data. Convenience sampling also introduced experimenter bias, as several participants were known to the researcher. This bias likely had little effect on the construction of the prototype app; however, it may have impacted the participants’ ratings of the app. To mitigate bias, a structured interview format was chosen.
Most of the features that PWE and their carers would find most useful were included in the prototype. However, several features were not included due to time constraints and program limitations. These features included chart and graphing capabilities, a mental health check-in, and sharability features. Future versions of the app should include these features, as they were ranked highly by participants. Notifications were set up externally using Google Calendar due to program limitations. However, this feature is neither easy-to-run nor user-friendly, and future versions should include an in-app notification setting, rather than external hosting. Because building the app reached the limits of the drag-and-drop program, future versions would need to be configured using a coding computer language such as JavaScript or HTML.
Based on participant ratings, the prototype performed similarly to other apps currently on the market. Two of the most consistently highly rated epilepsy apps are Seizure Tracker and Epilepsy Journal (“The 10 Best Epilepsy Apps”). Seizure Tracker has a 3.8 out of 5 star rating from 70 reviews on the app store, and Epilepsy Journal has a 4.3 out of 5 start rating from 619 reviews. By comparison, this app received a 4.5 rating from the trial participants, although a greater sample size is warranted. One benefit of this app is that it contains a wider variety of features than the two current market competitors (Table 1).
Table 1: Comparison between prototype app and current market
app
Based on the pre-interview results conducted, these features closely align end user preferences. Rather than focus on one specific aspect of seizure tracking, as many other apps do, the prototype app approaches living with epilepsy from a broader angle, including features that would otherwise require several apps.
Appendices
References
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