ArticleParulekar M, Kazmerski TM, Gordon D, Syed T, Waters JFR, Van Cott AC, Kirkpatrick L.
Epilepsy Behav. 2023 Oct;147:109420.
OBJECTIVE: To develop online patient education materials about epilepsy for adolescent and young adult females with epilepsy through co-production in partnership with patients, parents or caregivers, and multi-disciplinary healthcare providers who care for this population.
METHODS: We recruited participants from Western/Central Pennsylvania, comprised of females with epilepsy ages 18-26 or parents of children with epilepsy ages 12-26. Healthcare providers who participated in the study were recruited nationally from disciplines of pediatric epilepsy, adult epilepsy, women's neurology, and adolescent medicine. We held three series of meetings to create the online materials from July to August 2021.
RESULTS: Five adolescent and young adult females with epilepsy (ages 18-26, median age 22) and two parents of children with epilepsy were recruited and participated in meetings. The physician group was comprised of two adolescent medicine physicians, one adult neurologist with a specialization in women's neurology, one adult epileptologist, and one pediatric epileptologist. All participants were female. Several sets of meetings were held, which involved the creation of an empathy map to evaluate the needs and desires of our participants, topic list development, and specific content and formatting recommendations. After these meetings, content was created for the online materials and published on the Center for Young Women's Health (CYWH) website.
CONCLUSION: Our team utilized co-production with a diverse group of partners to create educational materials that met the interests of adolescent and young adult females with epilepsy. This is a structured and reproducible methodology that could inform future educational intervention development in epilepsy.