Background

Neonatal seizures and antiseizure medications both have potentially serious consequences on the developing brain. As such, optimal treatment of neonatal seizures remains unclear. Moreover, little is known about parental experiences, concerns, or unanswered questions. We conducted an online survey to assess parental perspectives regarding neonatal seizures and their management, along with their suggestions for specific high priority research topics.

Methods

Parents whose children had neonatal seizures were recruited through social media support groups to complete an online survey. Respondents progressed through a tiered series of questions about their experiences with neonatal seizures and antiseizure medications.

Results

There were 126 eligible respondents. On a Likert scale, parents reported that neonatal seizures had a major effect on their families (median 10 of 10; interquartile range 3; n = 85). They also reported that antiseizure medications had a significant impact on their families (median 7 of 10; interquartile range 5.5; n = 75). The emotional impact of the uncertainty regarding seizures and medications was highlighted. Effects on neurodevelopment, continued seizures, and adverse effects of medications were some of the most commonly reported parental concerns and their highest priority research topics.

Conclusions

Both neonatal seizures and the medications used to treat them contribute to parental worries and have major impact on families. Patient-centered outcomes research should focus on the risk-benefit ratio of neonatal seizures and antiseizure medication. The emotional impact on parents related to the uncertainty regarding both immediate and long-term neonatal seizure management is important to address in the clinical setting.