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A woman looking out of the window at the city, thinking about her epilepsy self-management techniques.

An Evolution in Measuring Epilepsy Self-Management

by Dr Nessie Riley and Medically Reviewed by Leen Hashem
4 minute read

This article is brought to you by The SideByte, your go-to source for the latest news and research in digital health, distilled into just a few minutes of reading.

The Study

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.

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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 Details

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.

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The Outcomes

Participant Cohort:

  • Participants were predominantly white (83%), and female (73%) and almost a third were unable to work due to disability (32%)
  • Most participants had experienced a seizure within the last year (77%), and over half of these were tonic-clonic seizures (51%)
  • Most used anti-seizure medication (96%), with fewer using a neuromodulatory device (10%), or diet or surgery (<7%)

AESMMI-38 Verification:

The new scale retained its robust dimensional properties and reliability while improving its psychometric properties. The Cronbach’s Alpha, a measure of internal consistency in the question items, for the amended survey was very good (0.912) and there was a significant correlation of the survey with overall quality of life (p <.0001).

Overall, the amended AESMMI-38 provides researchers with a measure of epilepsy self-management that is faster to administer and score, yet reliable and valid.

In addition, the shorter survey is correlated with quality of life, indicating that it has potential value for studies focusing on wellbeing in epilepsy patients. 

Further research is needed in global settings to account for the predominantly white, female, American cohort in this study, but the development of a shorter version of this assessment tool shows promise for increasing its adoption in research, in clinical practice and as program endpoints in epilepsy digital health solutions.

The Key Takeaway

Epilepsy self-management is important to understand and address in patient-centred care and research. The shorter AESMMI-38 is a reliable tool which may be used to measure epilepsy self-management, assisting in improving outcomes for epilepsy patients by improving our understanding of their coping mechanisms.

For digital therapeutics, the new AESMMI-38 may be a better tool to implement when assessing patients’ quality of life, and over time may also highlight areas where patients need additional support.

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