Researchers at the Emory University and the Managing Epilepsy Well (MEW) Network have developed a comprehensive instrument to measure self-management. The project included the development of the Adult Epilepsy Self-Management Instrument (AESMMI) in different phases and its pilot with over 400 people with epilepsy. People with epilepsy, like many other people with chronic illnesses, must master different management tasks and skills. Components of epilepsy self-management include medication, seizure, safety, information, and lifestyle management. This project, led by Dr. Cam Escoffery, with Drs. Yvan Bamps and Nancy Thompson at the Rollins School of Public Health, sought to develop a more standardized instrument for epilepsy self-management (eSM) assessment that can be used in clinical and research settings. The initial 113-item instrument included 10 exploratory domains for epilepsy self-management: treatment, symptom, seizure, lifestyle, wellness, safety, information, communication, social support, and stigma management.
The study results showed that participants reported performing sets of behaviors related to managing treatment and stigma, symptoms, wellness, communicating with providers, and information seeking more frequently than other areas such as safety and seeking social support. We found that adults with lower education and income may be poorer self-managers than those with higher income and/or educational levels. These findings are important, indicating potential need for epilepsy and health centers to provide more support in these areas to improve their psychosocial and physical health, in addition to epilepsy treatment management. In addition, instrument refinement was also conducted through factor analyses resulting in a 65-item scale.
This research is significant in terms of measurement of self-management for chronic illnesses. This eSM instrument could be used in the development and testing of evidence-based eSM programs as a potential outcome and could provide a standard measure by which to compare the effectiveness of different interventions focusing on eSM.
Other work from the MEW Network can be found at http://web1.sph.emory.edu/ManagingEpilepsyWell/.
Full results from this project are published in Epilepsy & Behavior, and are available online now until November 1.
Development of the Adult Epilepsy Self-Management Measurement Instrument (AESMMI)
Factor Analyses of an Adult Epilepsy Self-Management Measurement Instrument (AESMMI)