Featuring the work of CURE PTE Initiative members Dr. Jeffrey Loeb and Dr. Dilip Pandey
PURPOSE: People with epilepsy (PWE) from underserved populations face significant barriers to epilepsy management and therefore may lack knowledge about epilepsy and self-management (SM) of epilepsy. This paper evaluates SM practices, self-efficacy, outcome expectancy, quality of life, and personal impact of epilepsy in PWE from underserved populations as compared with all PWE.
METHODS: Recruitment for the Managing Epilepsy Well (MEW) Network PAUSE to Learn Your Epilepsy study occurred from October 2015 to March 2019. Participants were assessed at baseline; after SM education intervention; and 6-, 9-, and 15-month postbaseline assessment. Baseline data from 112 PWE were analyzed for this report.
RESULTS: Study population was diverse: 63% were women, 47.3% were non-Hispanic black, 24.1% were Hispanic, and 57.4% had public healthcare coverage. Participants on average had epilepsy for 14 years, and 49.1% reported at least one seizure within the past month, but only 27% reported having used a seizure diary or calendar for seizure tracking. Self-management practices & behaviors were significantly lower among people with epilepsy from underserved populations than all people with epilepsy, though self-efficacy among people with epilepsy from underserved populations was significantly higher.
CONCLUSION: This study identifies the unique epilepsy self-management needs of people with epilepsy from underserved populations. The research team discusses the need for a personalized approach for developing self-management skills and behaviors among these people with epilepsy.