Preferences of Adolescents and Young Adults with Epilepsy and Caregivers on Reproductive Health Counseling by Neurologists: A Concept Mapping Study
Laura Kirkpatrick1, Erin Friel1, Jasmin Rivero-Guerra1, Amy Tao2, Janani Kassiri3, Marie Clements4, Christina Briscoe Abath5, Page Pennell6, Jessica Burke1, Sara Baumann1, Traci Kazmerski1
1University of Pittsburgh, 2Princeton University, 3University of Alberta, 4University of Louisville, 5Boston Children's Hospital, 6University of Pittsburgh School of Medicine
Objective:
To use concept mapping to ascertain preferences of people with epilepsy of child-bearing potential (PWECP) ages 14-26 years and caregivers for reproductive health counseling by neurologists.
Background:
The American Academy of Neurology (AAN) recommends that neurologists counsel PWECP ages 12-44 years old annually about at least two of three topics: folic acid, interactions between antiseizure medications (ASMs) and contraceptives, and ASM effects on pregnancy and/or fetal/child development. However, guideline development did not include the perspectives of younger PWECP or caregivers.
Design/Methods:
We recruited PWECP ages 14-26 years and caregivers from one institution's child neurology clinics, a research registry, and epilepsy-related listservs. Participants: 1) generated topics about epilepsy and reproductive health important for neurologist counseling of PWECP ages 14-26 years, 2) sorted topics into conceptually-related categories, and 3) rated topics' importance on 5-point Likert scales for PWECP ages 14-17 and 18-26 years.
Results:
Thirty-four PWECP and 20 caregivers generated 37 topics, which were sorted/rated by 35 PWECP and 23 caregivers. Consensus categories included "Contraception," "Hormonal changes" (including hormonal influences on seizures, catamenial epilepsy), "Sex and Epilepsy" (including sexual function, relationships), "Parenthood with Epilepsy" (including heritability/genetics, post-partum concerns), "Pregnancy with Epilepsy" (including effects of seizures/ASMs during pregnancy), and "Preparing for Pregnancy" (including planning, folic acid, fertility). There was a negligible positive correlation (r=0.05) between importance for ages 14-17 and 18-26. For ages 14-17 years, categories rated at least 4/5 for importance included "Contraception" (4.50/5), "Sex and Epilepsy" (4.32/5), "Hormonal Changes" (4.3/5)," and "Preparing for Pregnancy" (4.12/5). For ages 18-26 years, all categories were rated at least 4/5: "Pregnancy with Epilepsy" (4.64/5), "Preparing for Pregnancy" (4.56/5), "Contraceptives" (4.51/5), "Parenthood with Epilepsy" (4.48/5), "Sex and Epilepsy" (4.47/5), and "Hormonal Changes" (4.21/5).
Conclusions:
PWECP ages 14-26 want counseling about reproductive health and epilepsy from neurologists that is more comprehensive than current AAN recommendations and tailored by age.
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.