Preferences of Adolescents and Young Adults With Epilepsy and Caregivers on Reproductive Health Counseling by Neurologists: A Concept Mapping Study

Abstract

Objective

To ascertain reproductive health counseling priorities of adolescent and young adult women with epilepsy (AWWE) and caregivers during neurology visits.

Methods

We recruited AWWE aged 14-26 years and caregivers from institutional neurology clinics, a research registry, and epilepsy listservs for a Concept Mapping study. Participants (1) brainstormed topics important for counseling of AWWE about reproductive health, (2) sorted topics into categories and rated their importance (on a five-point Likert scale) for AWWE aged 14-17 and 18-26 years, and (3) met to interpret study findings. We included a small subset of the participants in the interpretation meeting to allow meaningful discussion.

Results

Thirty-four AWWE and 20 caregivers generated 37 topics, which were sorted/rated by 35 AWWE and 23 caregivers; seven AWWE and nine caregivers attended the interpretation meeting. Consensus categories included “Hormonal Changes,” “Contraception,” “Sex & Epilepsy,” “Preparing for Pregnancy,” “Pregnancy with Epilepsy,” and “Parenthood & Epilepsy.” For ages 14-17 years, categories rated at least 4.00 for importance included “Hormonal Changes,” “Contraception,” “Sex and Epilepsy,” and “Preparing for Pregnancy.” For ages 18-26 years, all categories were rated at least 4.00. In the interpretation meeting, participants proposed a previsit checklist tool to indicate topics of interest.

Conclusions

AWWE want counseling about reproductive health from neurologists that is tailored by age and more comprehensive than current American Academy of Neurology recommendations. Use of a previsit checklist tool may help identify individual patient and family counseling priorities.