Abstract
Rationale: Women with epilepsy (WWE) have unique disease-specific considerations regarding their sexual and reproductive health (SRH), which impact decision-making around pregnancy and contraception. Understanding their perspectives, preferences, and experiences regarding SRH care contributes to optimizing patient-centered clinical practice. MethodsWe conducted individual semi-structured interviews with WWE aged 18–45 years, exploring their SRH care experiences and preferences. We audio-recorded and transcribed all interviews. Two coders used both inductive and deductive strategies to perform thematic analysis and identify key themes and representative quotes. ResultsTwenty WWE completed interviews (median age 23 years; range 18–43 years). Key themes included: 1) SRH counseling from neurologists often did not occur, was limited in scope, or contained misinformation, especially during adolescence and early adulthood. In particular, participants felt that they received poor counseling about contraception, fertility, folic acid, and teratogenic medications, which impacted their reproductive decision-making. 2) WWE report fragmented care between their neurologist and other SRH providers. 3) WWE prefer that their neurologists initiate routine comprehensive discussions about SRH. 4) Conversations about SRH should begin in adolescence and include private confidential discussions between neurologists and WWE. 5) Successful SRH conversations between neurologists and WWE involve detailed information, reassurance, and support for the patient’s reproductive goals. ConclusionWWE desire comprehensive, coordinated counseling and care regarding SRH and epilepsy, and often experience suboptimal SRH care. Better understanding of the SRH needs, preferences, and experiences of WWE will help inform interventions to optimize patient-centered SRH counseling and care by healthcare professionals, especially during adolescence.
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