RESUMO
STUDY OBJECTIVES: To explore knowledge and experiences of women with narcolepsy on pregnancy and contraception issues and their relationships with narcolepsy pharmacotherapy. METHODS: An 18-item survey was administered through the Narcolepsy Network website for 8 weeks during the fall of 2012. The survey ascertained demographic information; prescription narcolepsy medication use and discontinuation during pregnancy; physician counseling regarding pregnancy, contraception, and medication usage; and pregnancy history and outcomes. Frequencies of responses were analyzed and compared between pharmacotherapy groups. RESULTS: Surveys from 182 women (age 41.5 ± 15.2 years) with narcolepsy were analyzed. Most of the respondents (78.7%) who reported a history of pregnancy did not use pharmacotherapy during pregnancy. Most of them discontinued narcolepsy pharmacotherapy during pregnancy because of their own fear of harming the fetus (82.9%), and 58.5% noted advice of discontinuation from their narcolepsy physician as a factor in their decision. As an alternative to pharmacotherapy, 72.1% of women extended their sleep time, 32.6% discontinued working, and 27.9% discontinued driving. Similar pregnancy and fetal outcomes were reported between women using monotherapy, polytherapy, or no therapy during pregnancy, but some outcomes were worse than national averages. In general, women with narcolepsy were dissatisfied with the amount and type of counseling that they received regarding pregnancy and contraception. CONCLUSIONS: Improved health education counseling and symptom management options are needed for women with narcolepsy to improve pregnancy management and outcomes in this population.