Escoffery C, et al. Reduction of the Adult Epilepsy Self-Management Measure Instrument (AESMMI) Epilepsy & Behavior. 2022;131(Pt A):108692
Epilepsy Self-Management: The Story
In 2015, Escoffery and colleagues created a questionnaire-based tool, the AESMMI-65, to measure how patients with epilepsy were self-managing their condition. The aim of this study, however, was to develop an abbreviated version of the AESMMI-65 to facilitate its use in future epilepsy research and clinical practice.
Why it’s Important
Epilepsy is a chronic and disruptive neurological condition involving repeated seizures that can affect a patient’s overall welfare. By self-managing their lifestyle and routine, epilepsy patients could improve their quality of life through decreasing their seizure frequency, optimizing their diet, and improving social and mental wellbeing.
Self-management actions that patients frequently employ include tracking their treatment adherence, keeping a seizure diary, and learning about potential seizure triggers.
A reliable tool is needed to measure the frequency with which patients are using these techniques in order for clinicians to understand how a patient is faring in their treatment, and the extent to which their patient is needing to self-manage their condition. This can then inform onward referrals for areas the tool has identified a patient may be struggling with.
Equally, a reliable epilepsy self-management tool can be used to further research by assessing the impact of epilepsy self-management programs, particularly in the context of emerging digital therapeutics designed for supporting people living with epilepsy.
The original AESMMI-65 tool was modified to a shorter 38-question version through an iterative process based on discussions with behavioral scientists and neurologists. The resulting AESMMI-38 was still based on the original 11 domains of self-management consisting of: Healthcare Communication, Treatment, Coping, Social Support, Seizure Tracking, Wellness, Seizure Response, Safety, Medication Adherence, Stress Management and Proactivity.
The questions that were removed were either overlapping with similar questions elsewhere in the tool, or they offered less value in measuring one of the main domains. The final version included questions such as:
- “I teach my family and friends what to do during a seizure.”
- “I have healthy ways to cope when I am feeling sad or down.”
Patients were then recruited through epilepsy clinics in the USA to complete the new AESMMI-38 survey in order to analyze it for validity, and 422 surveys were included in the final analysis.