Although the risk of fatality from epilepsy is relatively low, sudden death is 20x more likely if you have epilepsy—and 42 percent of these deaths are avoidable. Yet, physicians often struggle to decide when and how to discuss this risk with epileptic patients. In a recent study conducted by researchers from Plymouth University, physicians implemented a patient-centered checklist intervention in an attempt to encourage patient education around the risk of sudden death.
The risk checklist
The first phase of the four-phase intervention involved a retrospective study of people with epilepsy (PWE) who died suddenly. A coroner reviewed cases and compared them to the risk factors identified in the checklist. According to the study, modifiable risk factors were identifiable three to six months prior to death.
In the second phase, the checklist was used for two years as part of routine clinical practice. Feedback from more than 200 PWE/caregivers was overwhelmingly positive. PWEs who had high levels of risk, based on the checklist, looked to make potentially live-saving behavior changes. Those with little risk reported being glad to know that the risk of sudden death in epilepsy exists.
Phase 3 involved a telehealth pilot in which 15 high-risk patients. Every three months a nurse called the patients to assess their risk with the checklist tool. This successfully raised awareness of warning signs and helped improve the management of high-risk patients.
Jane Hanna, co-author of the article and CEO of SUDEP Action, says:
We were thrilled that introducing the checklist into routine practice meant that 80% of people seen by services in Cornwall had their risk assessed and reported this as helpful. National guidelines introduced in 2004 encouraged discussion, but it has not been happening in many places. We hope that clinicians will like this simple approach that encourages a positive discussion of risk.
Epilepsy Self-Monitor empowers patients
In the final phase of the study, the Plymouth team joined forces with SUDEP Action, Cornwall Foundation NHS Trust, and Royal Cornwall Hospital to create a mobile self-monitoring app. The app, which they’ve named Epilepsy Self-Monitor (EpSMon), is expected to be released in the UK in June (for iOS), and in late 2015 (for Android). Release outside the UK will be considered after initial user feedback is evaluated.
Patients using EpSMon for the first time are prompted through the checklist to get a baseline risk. Then, every three months, users are prompted to complete an assessment. The app lets them know if and how their symptoms may be changing. Patients can use the results as a starting point in their conversations with their general practitioner at their next scheduled visit—or the app may suggest that a medical intervention is needed sooner.
People may only see a doctor once a year for their epilepsy…EpSMon is designed to help people be aware of why and when a medical review of their epilepsy is important. It will flag up whether help should be sought earlier than planned because risks have worsened.
Epilepsy in the UK
According to a recent survey conducted by Epilepsy Action, a full third of respondents indicated that they hadn’t had or couldn’t recall receiving an invitation to review their epilepsy treatment with a health professional in the last two years.
While there can be no guarantees, mobile tools like EpSMon help patients to better understand their specific risks, and also when to seek help if their condition changes.