Abstracts

Rationale: A genetic contribution to most epilepsy syndromes is well-recognized, although most syndromes do not follow straightforward Mendelian inheritance patterns. While anecdotal evidence indicates that people with epilepsy overestimate the risk of their children to develop epilepsy, previous research investigating family planning issues has primarily focused on the management of seizures and the use of antiepileptic drugs during pregnancy. Little consideration has been given to other factors that may be important in the family planning process and to how people with epilepsy perceive the risk to their children. Methods: Adults aged 18 or older with seizure onset before childbearing, or before age 45 if the participant did not have children, were ascertained at outpatient epilepsy clinics. Data were collected using a questionnaire assessing perceived risk of offspring to develop epilepsy. The questionnaire also assessed the importance of several factors in the reproductive decision-making process among individuals with epilepsy, whether participants chose to have fewer children because of their diagnosis, and the association between risk perception and the decision to have fewer children. Results: Data were available for 88 participants, corresponding to a 44% response rate. The mean age was 37 years (range 18 - 71), and 67% of participants were female. The most common epilepsy syndromes were Temporal Lobe Epilepsy (34%), Idiopathic Generalized Epilepsy (27%), and Frontal Lobe Epilepsy (13%). The mean estimated risk of offspring to develop epilepsy was 26% (95% CI 22 - 31%). Although this is considerably higher than the actual empiric risk of 4 - 8%, the perceived comparative risk was accurately estimated (4.1-fold increase; 95% CI 2.8 - 5.4). Risk perception was not associated with the decision to have fewer children. A significant number of participants (34%; 95% CI 23 - 45%) had fewer children because of their epilepsy, and concerns about the ability to care for a child (p < .0001) and passing epilepsy on to a child (p = .003) were significantly associated with the decision to have fewer children. Concerns about antiepileptic drug use during pregnancy were not associated with altered family planning decisions. Conclusions: We found that patients overestimate the risk of their children to develop epilepsy and that many patients have fewer children due to their seizure disorder. The ability to care for a child and the risk of passing epilepsy on to offspring are the only factors associated with this decision. This study found no evidence to suggest that medication-related concerns drive the decision to have fewer children, which is contrary to commonly held beliefs in the prenatal care of women with epilepsy. Individuals with epilepsy may benefit from discussions with their healthcare providers about the impact their epilepsy may have on caring for children. Genetic counseling may also be of benefit for people with epilepsy, given the considerable overestimation of absolute risk to offspring.