031 - Counseling Reproductive-Age Youth with Epilepsy: A Consensus Recommendation of the Epilepsy in the Child-Bearing Ages through Menopause Consortium

Publication Number: 31.4558

Laura Kirkpatrick, University of Pittsburgh School of Medicine, Pittsburgh, PA, United States; Marie E. Clements, University of Louisville, Louisville, KY, United States; Christina Briscoe Abath, Boston Children's Hospital, Boston, MA, United States; Janani Kassiri, University of Alberta Faculty of Medicine and Dentistry, Edmonton, AB, Canada

Background: Epilepsy in the Child-Bearing Ages through Menopause (ECAM) is an international consortium of clinicians dedicated to the advancement of the health of people with epilepsy who are assigned female at birth. ECAM’s Adolescent and Young Adult Committee addresses quality of care for reproductive-age youth with epilepsy (RAYE). At present, there are no comprehensive guidelines about care for RAYE, as current guidelines are geared towards adults or are not specific to the needs of this population.

Objective: ECAM’s Adolescent and Young Adult Committee aimed to develop a consensus statement on standards for counseling addressing the specific health needs of RAYE by pediatric neurologists, adolescent medicine specialists, and pediatricians.

Design/Methods: The ECAM Adolescent and Young Adult Committee comprises 30 epileptologists and adolescent medicine specialists across 26 institutions in 3 countries. The process involved: 1) Committee members identified and voted on key categories essential for counseling of RAYE. 2) Once the topics were determined, subgroups conducted comprehensive literature reviews for each priority area and developed draft statements detailing recommended content for in-visit counseling, informed by highest-quality available evidence. 3) The committee then iteratively reviewed, discussed, and revised these statements during monthly regular meetings to refine content and ensure clarity. 4) A final consensus for each key area was reached through a structured voting process, with each statement requiring a predefined threshold of 100% agreement among committee members for approval.

Results: The ECAM consensus process identified 9 key categories as crucial for counseling specific to RAYE, including contraceptive options, interactions between antiseizure medications (ASMs) and contraception, ASM teratogenicity, folic acid supplementation, heritability of epilepsy and genetics, pregnancy planning including fertility, catamenial epilepsy, menstrual symptoms and disorders, and sexual and psychosocial history. Final consensus recommendations from one topic are described in Table 1 as an example.

Conclusion(s): These consensus guidelines provide a clear, novel framework for pediatric neurologists, adolescent medicine specialists, and pediatricians to address health issues during outpatient visits with RAYE. These recommendations will guide professional education and quality improvement initiatives to improve the quality of care delivered to RAYE.

Table 1. Representative Example of Consensus Statements for One Key Topic