To utilize co-production for patient-centered online education materials about epilepsy and sexual and reproductive healthcare (SRH) for adolescent and young adult women with epilepsy (WWE).

WWE have varied educational needs regarding epilepsy specific SRH information. WWE have reported interest in education on SRH from their healthcare providers. Providers have also expressed interest in providing online educational materials to their patients.

Participants included WWE ages 18-26 and parents of children with epilepsy ages 12-26 from Western and Central Pennsylvania. Physicians were recruited nationally from varied disciplines. Panel meetings held from July-August 2021 focused on creation of empathy maps, topic lists, and formatting. Topics were ranked based on interest from 1.0 to 5.0. Web guides were published in December 2022.

Five WWE and two parents participated in meetings. All WWE were nulliparous. Physician participants included two adolescent medicine physicians, one adult neurologist specialized in women’s neurology, one adult epileptologist, and one pediatric epileptologist. All participants were non-Hispanic white females.

Empathy map meetings revealed a desire for intuitive, visually engaging content addressing communication challenges, safety management, SRH, and emotional support while living with epilepsy. Subsequent meetings aimed to identify topics that integrated medical, psychosocial, and SRH information. Recommendations from participants included using normalized language and focusing on commonly prescribed epilepsy medications while discussing teratogenicity risk without perpetuating stigma.

Participants expressed the need for educational materials covering epilepsy, well-being, and SRH, presented in a non-judgmental manner and sourced from reputable references. Ultimately, fourteen guides were created, selected based on a score of > 4.0, effectively addressing essential aspects for those living with epilepsy.

This set of web based educational materials successfully utilized co-production to meet the interests of WWE. This reproducible method can be utilized in future educational content for epilepsy and neurology.