A retrospective textual analysis of sexual and reproductive health counseling for adolescent and young adult people with epilepsy of gestational capacity

RationaleThe American Academy of Neurology (AAN) recommends annual sexual and reproductive health (SRH) counseling for all people with epilepsy of gestational capacity (PWEGC). Child neurologists report discussing SRH concerns infrequently with adolescents. Limited research exists regarding documentation of such counseling. Methods: We retrospectively studied clinical notes using natural language processing to investigate child neurologists' documentation of SRH counseling for adolescent and young adult PWEGC. We segmented notes into sentences and evaluated for references to menstruation, sexual activity, contraception, folic acid, teratogens, and pregnancy. We developed training sets in a labeling application and used machine learning to identify additional counseling instances. We repeated this iteratively until we identified no new relevant sentences. We validated results using external reviewers; after removing sentences reviewers disagreed on (n = 13/400), we calculated Cohen's kappa values between the model and reviewers (>0.98 for all categories). We evaluated labeled texts for each patient per calendar year with descriptive statistics and logistic regression, adjusting for race/ethnicity, age, and teratogen use.Results: Data comprised 971 PWEGC age 13-21 years with 2277 patient-years and 3663 outpatient child neurology notes. Nearly half of patient-years lacked SRH counseling documentation (49.1%). Among all patients, 38.0% never had SRH counseling documented. Documentation was present regarding menstruation in 26.7% of patient-years, folic acid in 25.0%, contraception in 21.9%, pregnancy in 3.5%, teratogens in 3.0%, and sexual activity in 1.8%. Documentation regarding menstruation and contraception was associated with prescription of antiseizure medications that have a higher risk of teratogenic effects (OR = 1.27, p = 0.020, 95% CI = [1.04,1.54]; OR = 1.27, p = 0.027, 95% CI = [1.03,1.58]). Documentation regarding contraception, folic acid, and sexual activity was increased among older patients (OR = 1.28, p < 0.001, 95% CI = [1.21,1.35]; OR = 1.26, p < 0.001, 95% CI = [1.19,1.32]; OR = 1.26, p = 0.004, 95% CI = [1.08,1.47]). Documentation regarding sexual activity was decreased among patients identifying as White/Non-Hispanic (OR = 0.39, p = 0.007, 95% CI = [0.20,0.78]).Conclusion: Child neurologists counsel PWEGC on SRH less frequently than recommended by the AAN based on documentation. & COPY; 2023 Elsevier Inc. All rights reserved.