Parents' and children's decision-making and experiences in pediatric epilepsy surgery

Background: In pediatric epilepsy surgery, little research has been conducted on parents' decision-making for or against surgery, their satisfaction with the surgical outcome, as well as their children's personal experiences with the process. Objective: This study explores (1) factors that may influence parents' decision-making, (2) factors associated with their postoperative satisfaction, and (3) their children's involvement in decision-making and their experiences with epilepsy surgery. Methods: Self-developed questionnaires were provided to parents and their children in Germany, Switzerland, and Austria. Clinical and psychosocial differences between parents who decided for or against surgery, as well as associations between postoperative factors and the parents' satisfaction were statistically analyzed. Results: Fifty-one questionnaires (42 parent and nine patient questionnaires) were evaluated. Parents who decided for epilepsy surgery reported significantly more frequently to have received a good medical consultation and a consistent recommendation. They made significantly less use of information websites, internet forums, and patient organizations. Their children were classified as more intelligent and resisted surgery less. Most of the parents were satisfied with the surgical outcome (83%). Parents were significantly more satisfied when their children had fewer medication side effects, their memory or concentration had improved, their character or behavior had changed in a positive direction, or when their children were more independent or less excluded. They were also significantly more content when they had more free time to themselves and their professional situation or their relationship with their children, friends, or other family members had improved. However, no significant association was found between parental satisfaction and reduced number of medications or improved seizure outcome. Although the children were reported to have been minimally involved in the decision-making process, they were satisfied with their involvement. Conclusions: A good medical consultation that involves the children and considers the family's living conditions is a crucial factor for parents' decision-making on pediatric epilepsy surgery. For parents' satisfaction, a positive change in their child's character or behavior and an improved psychosocial situation of the family are more important than postoperative seizure frequency or number of antiepileptic drugs (AEDs). Therefore, the medical consultation should not only focus on clinical factors, but also point out psychosocial and behavioral changes that may occur after the surgical treatment. (C) 2020 Elsevier Inc. All rights reserved.