Counseling Adolescents About Reproductive Health and Epilepsy (CARE): Optimization and Feasibility Testing of a Multi-Level Intervention
openNINDS - National Institute of Neurological Disorders and Stroke
Project Summary
Reproductive-age youth with epilepsy (RAYE) are at risk for adverse reproductive health
outcomes. Certain antiseizure medications (ASMs) reduce the efficacy of some contraceptives
and some ASMs adversely affect fetal development. Unplanned compared to planned
pregnancy among people with epilepsy has been associated with increased rates of pre-term
birth, congenital malformations, and seizures during pregnancy. Information about planning
pregnancy, including use of contraception, is especially crucial for youth, who are at higher risk
of unplanned pregnancy than adults. RAYE are also more than twice as likely to be prescribed
teratogenic ASMs as adults over 24 years old. As reproductive health education is known to lead
to better reproductive health outcomes for adolescents, informing RAYE about reproductive
health and epilepsy is imperative. An important strategy to educate RAYE about epilepsy and
reproductive health is through child neurology clinicians. My prior work found that RAYE and
caregivers want epilepsy-related reproductive health counseling from child neurology clinicians,
as is recommended by the American Academy of Neurology and Child Neurology Foundation.
Yet my research has indicated that child neurology clinicians often omit this counseling or
miscommunicate key messages. To address these challenges, I have developed a prototype of
a multi-level intervention: Counseling Adolescents about Reproductive Health and Epilepsy
(CARE). CARE combines 1) child neurology clinician online counseling skills training, 2) follow-
up Short Messaging Service (SMS) messages for RAYE, and 3) SMS messages for caregivers
to empower them to reinforce healthy behaviors. Through this proposed project, I will 1.
optimize CARE with input from key stakeholders (clinicians, RAYE, and caregivers), 2. test the
feasibility of CARE through a pilot trial, and 3. assess determinants of implementation of
CARE through follow-up qualitative interviews with trial participants (clinicians, RAYE, and
caregivers). These aims will provide the foundation for a future R01 application for a multi-
center cluster-randomized controlled trial to test the clinical efficacy of CARE. This K23 proposal
will support career development objectives in engaging adolescents in research, intervention
development, conducting clinical trials, and implementation science. This grant will prepare me
to become an independent investigator focused on optimizing the reproductive health of RAYE.
Up to $225K
health research