Pediatric neurology · 2025
Preferences of Adolescents and Young Adults With Epilepsy and Caregivers on Reproductive Health Counseling by Neurologists: A Concept Mapping Study.
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Kirkpatrick Laura, Friel Erin, Rivero-Guerra Jasmin, Tao Amy, Kassiri Janani, Clements Marie, Briscoe Christina, Pennell Page B, Burke Jessica G, Baumann Sara, Kazmerski Traci M
Аннотация
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.
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.