Abstracts

Rationale: There is considerable evidence of reduced fertility in epilepsy, though findings are not entirely consistent across studies. Few studies have investigated the contribution of reproductive decision-making to reduced fertility, or the impact of genetics on reproductive decisions. Methods: We are currently carrying out a detailed survey of previous participants in genetic research on the epilepsies, to assess the psychosocial impact of having epilepsy themselves or in their families, beliefs about epilepsy genetics, and interest in genetic testing. The survey will target more than 1,000 adults who are members of 115 families containing multiple individuals with epilepsy (average 4 affected per family). Among 164 participants contacted so far, 144 (88%) have agreed to participate. Here we report preliminary results on 80 individuals (28 with epilepsy, 52 unaffected relatives) who completed the survey as of June 2013. Questions about the influence of certain factors in reproductive decision-making were asked of all participants, who were asked to rate on a six-point scale whether each factor made them less likely to want to have a child, had no effect at all, or made them more likely to want to have a child. We analyzed differences in responses in relation to epilepsy history of the individual, sex, age, education, and attribution of epilepsy in their family to genetics.Results: Among participants with epilepsy, 19% said they would have wanted more children had they not been affected. Among participants aged 50 or older, the proportion who said they wanted no biological children was 27% for those with epilepsy and 8% for those without. Overall, 23% of individuals said the chance of having a child with epilepsy made them less likely to want to have a biological child, with similar frequencies in individuals with (20%) and without epilepsy (25%). The proportion of participants who reported this impact was greater among those with less education (less than college graduate 41% vs. college graduate or higher 13%, p=0.009), and among those with greater attribution of epilepsy to a genetic cause (role of genetics in causing epilepsy in your family: medium/big 29% vs. small/none 9%, p=0.059).Conclusions: Concerns about having a child with epilepsy are highly salient among members of families containing multiple affected individuals, and may underlie some of the reduced fertility among individuals with epilepsy. This research was supported by R01 NS078419.