Patient knowledge about issues related to pregnancy in epilepsy: A cross-sectional study Amy Metcalfe a, b , Jodie I. Roberts a, b , Fatema Abdulla a , Samuel Wiebe a, b , Alexandra Hanson a , Paolo Federico a , Nathalie Jette a, b, ⁎ a Department of Clinical Neurosciences and Hotchkiss Brain Institute, University of Calgary, Calgary, Canada b Department of Community Health Sciences and Calgary Institute for Population and Public Health, University of Calgary, Calgary, Canada abstract article info Article history: Received 18 November 2011 Revised 1 March 2012 Accepted 2 March 2012 Available online 4 April 2012 Keywords: Epilepsy Questionnaire Pregnancy Patient knowledge In 2009, new guidelines were established by the American Academy of Neurology regarding pregnancy in women with epilepsy. A questionnaire was developed to assess patient knowledge of current guidelines related to epilepsy and pregnancy. Patients were recruited from a single outpatient clinic in a large Canadian tertiary care center. Patients were eligible to participate if they were female, of reproductive age, had active epilepsy for at least 6 months and were not cognitively impaired. One hundred women completed the survey (response rate 87%) with a median score of 40%. A significant association was found between total score and years of education (p b 0.001). Significant associations were not found between total score and epilepsy duration (p = 0.37), previously being pregnant (p = 0.22), and polytherapy (p = 0.31). Patient knowledge of the impact of epilepsy on pregnancy is low. More knowledge translation efforts are required to increase knowledge of issues related to pregnancy for women with epilepsy. © 2012 Elsevier Inc. All rights reserved. 1. Introduction It is clearly established in the literature that women with epilepsy who are of childbearing age have different information and treatment needs than men, due to the impact of epilepsy and antiepileptic drugs (AEDs) on pregnancy and birth outcomes [1–3]. This need for accu- rate information prior to pregnancy is critical as many AEDs have been associated with contraceptive failure, resulting in a high rate of unplanned pregnancies [1–3]. A British study of pregnancy in women with epilepsy found that 56% of pregnancies were unplanned and 24% of unplanned pregnancies were due to oral contraceptive failure [4]. While most women with epilepsy are able to conceive and have healthy children, pregnancy has been shown, in some cases, to lower the seizure threshold (resulting in an increased frequency of seizures), and many AEDs are teratogenic [3,5–7]; however, new evidence suggests that some newer generation AEDs may not be asso- ciated with an increased risk of major congenital malformations [8]. Balancing the risks between seizure control in the woman and the possible teratogenic effects of the medication on the fetus results in a clinically complex situation [1,3,7]. Several studies have found that physician knowledge of women's reproductive issues in epilepsy is poor, which can lead to patients receiving inadequate care [2,4,9–11]. Even though epilepsy is reported to be one of the most common neurological conditions to co-occur during pregnancy [12] and is estimated to affect 0.3–0.7% of all pregnancies [7], it is recognized that many clinicians will see very few of these women during the course of their clinical practice and consequently, may focus their continuing education on more prevalent conditions. However, counseling and educating patients are an essential aspect of quality care [13] and can, in part, be assessed by determining a patient's knowledge of their condition. This study aimed to assess the current level of knowledge regarding women's issues related to pregnancy in women with epilepsy who were of childbearing age. 2. Methods 2.1. Questionnaire A cross-sectional questionnaire was developed based on the 2009 American Academy of Neurology (AAN) guidelines regarding the medical treatment of women with epilepsy [14–16]. The question- naire was written at a grade 5 reading level and reviewed for clarity, readability and face validity by the study team. Readability was assessed using the Automated Readability Index, which uses the fol- lowing formula to calculate readability: (.37 × Average Sentence Length) + (5.84 × Average Word Length) -26.01 [17]. While a vali- dated patient questionnaire (Knowledge of Women's Issues and Epilepsy KOWIE-I) exists [18], it was not used for this study as the Epilepsy & Behavior 24 (2012) 65–69 ⁎ Corresponding author at: Foothills Medical Centre, 1403 29th Street NW, Calgary, AB, Canada T2N 2T9. Fax: +1 403 944 0988. E-mail address: nathalie.jette@albertahealthservices.ca (N. Jette). 1525-5050/$ – see front matter © 2012 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2012.03.001 Contents lists available at SciVerse ScienceDirect Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh