Photo Credit: BeritK

An app for forecasting seizures was found to be helpful and may result in better QOL, particularly in regard to improved feelings of control for patients.

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“More than one-third of people with epilepsy continue to suffer uncontrolled seizures,” Philippa J. Karoly, PhD, and colleagues wrote. “For these individuals, the fear of unpredictable seizures is a significant challenge that impinges on their autonomy, safety, and daily routines. Consequently, seizure risk forecasting has emerged as a potential tool to help relieve the burden of unpredictable seizures on people with epilepsy while also serving as a valuable tool for clinical decision making.”

For a study published in Epilepsy & Behavior, Dr. Karoly and colleagues examined user experiences with an app for seizure risk forecasting. Active app users completed a survey at baseline and 3-month follow-up to evaluate perspectives on the forecast feature as well as mood and adjustment. Post-hoc, nine neutral forecast users—individuals who neither agreed nor disagreed it was useful—participated in semi-structured interviews about their perspectives on epilepsy management and seizure forecasting.

Patients Report “Pervasive Uncertainty” and Lack of Control

The study team classified 111 users who completed surveys as app users or app and forecast users. App users (n=58) included respondents with access to the forecast feature who never viewed it and those without access to it. App and forecast users (n=53) viewed the forecast feature at least once within the preceding month.

Among the app and forecaster users group, 40% believed the forecast was accurate enough to help monitor seizure risk, and 60% used it for purposes such as scheduling events and helping with their mental state. Feeling more in control was the most common response to both high- and low-risk forecasted states, according to Dr. Karoly and colleagues. Patients also reported feeling more settled and confident during forecasted times of low risk.

The researchers also conducted semi-structured interviews with participants (n=9) who selected “neither agree nor disagree” when asked about the usefulness of the forecasting app. These interviews resulted in five themes:

• Living with seizures (uncertainty and lack of independence);
• Feeling stuck;
• Desire to control and understand one’s epilepsy;
• Efficacy of technology to enhance self-management; and
• Hope for the future.

Most interview respondents described “pervasive uncertainty” associated with epilepsy and the occurrence of seizures in relation to the theme of living with seizures (7/9), a belief in one’s ability to influence events in their own life (gaining control/understanding epilepsy; 7/9), and the desire to have more knowledge and data on their condition, in particular through an app or device (self-management; 8/9).

All interviewees described a lack of definitive answers about treatment and diagnosis regarding the theme of feeling stuck.

Technology Offers Potential to Improve Understanding

“The interviews gave us insight into the idea of gaining control, suggesting that this could be achieved, to a degree, through observing patterns and triggers in one’s seizures, and explains a shared desire for more self-knowledge and data insights into their condition,” Dr. Karoly and colleagues wrote. “These discoveries suggest that feelings of uncertainty experienced by people with epilepsy are not only associated with the unpredictability of seizure occurrence but also with the extent to which they believe they have control over and can influence events in their life (ie, internal locus of control).”

The researchers noted that prior research has linked a greater internal locus of control to perceived control over seizure occurrence, knowledge and understanding of the condition, and improved social support. In addition, interviews highlighted the benefits of technology, such as an app, for improving feelings of control and confidence. The results regarding technology also align with previous research and “indicate that simply providing a tool that facilitates a greater understanding of one’s epilepsy and seizure patterns could be helpful.”

Future research, Dr. Karoly and colleagues noted, should address some of the limitations of the present study, including potential selection bias and unanswered questions due to the survey’s short length, and incorporate observations about changes in patients’ behavior, mood scores, and QOL in relation to seizure forecasting.

“This is the first study to investigate user experiences and perspectives [with] a non-invasive seizure risk forecast mobile app,” the researchers wrote. “Our preliminary findings indicate that most people living with epilepsy express interest in monitoring their seizure risk forecast and occasionally utilizing it to modify their behaviors, particularly people with greater mood disorder symptoms. Findings also point to the potential for improved self-knowledge and a greater sense of control that could be fostered [with] seizure forecaster apps.”

Key Takeaways

• Patients who tested an app for forecasting seizure risk generally found it helped monitor seizure risk.
• Respondents who were uncertain about the app’s usefulness described feeling “stuck,” especially regarding a lack of answers about treatment and diagnosis.
• Overall, patients reported a lack of control related to the unpredictability of seizure occurrence and the extent to which they believe they could influence events in their own lives.