Preparing for pregnancy: Information needs

WWE require information concerning the increased risks associated with the management of epilepsy and its treatment throughout their reproductive years. This information is crucial to support their involvement in making informed reproductive decisions (Crawford and Lee, 1999). A number of studies have surveyed the information needs of WWE, identifying the extent of knowledge deficiency experienced by women and their poor satisfaction with service provision (Bell et al., 2002; Crawford and Hudson, 2003; Crawford and Lee, 1999; Wallace and Solomon, 1999; Fairgrieve et al., 2000). The significance of knowledge deficits were for women’s inability to avoid accidental pregnancy and their lack of awareness of the potential risks associated with their treatment (Madden, 1999). Accidental or unplanned pregnancy secondary to contraceptive failure has the potential to create continued anxiety about the risks of AEDs, and to result in women seeking information from other less creditable sources because of conflicting medical advice (Wallace and Solomon, 1999).

The disparity between women’s concerns about pregnancy and their awareness of effective contraception were the focus of the cross-sectional survey sampling WWE attending routine epilepsy care within the Columbia Comprehensive Epilepsy Centre (Davis et al., 2008; Pack et al., 2009). Of women who reported being sexually active, only 53% used effective methods of contraception (defined as contraception ≤10% experience of pregnancy in the first year of typical use) and 17% relied on unorthodox methods and the unsafe method of ‘withdrawal’. Of those women who had been pregnant, 61% reported at least one unplanned pregnancy (Davis et al., 2008). Women’s knowledge of AED-related risks was found to be limited and inaccurate for the majority, with some women reporting AEDs as either having no effect on fetal development or a ‘good effect’. For those women reliant on older AEDs (phenytoin, phenobarbitone, primidone, carbamazepine and sodium valproate) 40% were unaware of the potential teratogenic potential of their treatment, and 50% of women reliant on enzyme-inducing AEDs were incorrect about the potential for their treatment to reduce the effectiveness of oral contraceptives (Pack et al., 2009). History of pregnancy was not found to be associated with increased knowledge of AED-oral contraceptive interactions, leading to the authors to underscore the significance of knowledge deficits

for WWE as resulting in preventable morbidity including unplanned pregnancy, fetal exposure to teratogenic AEDs, and maternal stress (Pack et al., 2009).

The standard of care of WWE aged 14-55 years was examined as part of the Department of Health Clinical Standards Advisory Group (CSAG) questioning the information received on preconception and pregnancy topics. They found 40% of women recalled being advised of the need for pregnancy planning, 38% recalled being advised to commence folic acid prior to pregnancy and 48% of women recalled being advised of teratogenic risks (Bell et al., 2002). The results of the ‘Ideal World’ survey of female member of the UK charity Epilepsy Action, reinforced the value of written information about the effects of epilepsy on pregnancy and the risks to the unborn child being provided to support decision-making about adjusting AEDs when considering pregnancy (Crawford and Hudson, 2003). The potential improvements in epilepsy services for WWE were the focus of qualitative enquiry by Vazquez and colleagues (2007) who identified the level of dialogue between women and their physicians as insufficient to alleviate concerns.

Bagshaw et al (2008) reviewed women’s information needs concerning childcare and the potential seizure-related risks of accidents and injury to their infant. These authors found only 50% of women recalled being provided with information about caring and managing childcare risks. The implications of maternal knowledge deficits for the psychomotor development of children have been raised, with both the childcare environment and maternal abilities identified as important determinants. These studies highlighted mothers’ anxiety about their ‘mothering’ skills and lack of confidence in their abilities to protect their baby from harms (Hirano et al., 2004; Saramma et al., 2006; Bagshaw et al., 2008). The Kerala Registry of Epilepsy and Pregnancy group found a significant association between childrearing knowledge and practices, with WWE having significantly lower scores for childrearing knowledge, childcare monitoring and specific impairments of infant stimulation than women without epilepsy. The hesitations of WWE to actively involve themselves in cleaning and bathing their baby were felt to be due to the perceived fears both of the women themselves and family/carers concerning the risks of dropping the baby or causing injury (Saramma et al., 2011).

Improvement in women’s knowledge is contingent on the availability of information services and knowledgeable healthcare professionals. However, healthcare professionals have been found to lack the skills necessary to advise women of teratogenic risks (Hancock et al., 2007). Morrell and colleagues (2000) surveyed 3535 healthcare professionals across a wide range of specialities, finding 50% of respondents uncertain about the frequency of birth defects of children born to WWE, and most not knowing the recommended minimum dose of folic acid supplementation. Around three-quarters of pharmacists were aware of enzyme-inducing AEDs reducing the efficacy of contraceptives; but neurologists were found to have significant knowledge gaps. Only 33% correctly identified the increased risks associated with sodium valproate, and even fewer responded correctly about the older AEDs (Roberts et al., 2011; McAuley et al., 2009). The majority of neurologists recognised the potential benefit of folic acid supplementation, despite lack of awareness of the additional risks for neurodevelopmental deficits in children exposed to AEDs (Roberts et al., 2011). These findings are significant for the care of WWE, given their reliance on healthcare professionals as first contact when considering pregnancy (Vazquez et al., 2007). This is reflected within NICE clinical guidance (2012), which requires those responsible for prescribing AEDs to be aware of the ‘latest data’ concerning risks to the unborn child when prescribing to any women or girl with current or future childbearing potential (National Clinical Guideline Centre, 2012).

The need to reduce the health inequalities that result in an increased risk of adverse pregnancy outcome for WWE served as rationale for a formal systematic review to evaluate the evidence of effectiveness of preconception counselling for WWE, as part of The Cochrane Library series (JB Winterbottom et al., 2008).

2.4 Preconception counselling for women with epilepsy