Caregivers' impression of epilepsy surgery in patients with tuberous sclerosis complex

Epilepsy surgery is successful in the majority of patients with tuberous sclerosis complex (TSC), with high rates of postoperative seizure reduction and even seizure freedom. Epilepsy surgery is recommended after failing two appropriate antiseizure medication trials; however, this is rare in clinical practice. We hypothesized that following surgery, caregivers' perspectives on the path they took to epilepsy surgery would inform changes in clinical practice and future research to increase utilization and early use of surgery. A questionnaire was developed to explore caregivers' perspectives on their child's path to epilepsy surgery. All 46 caregivers that filled out the majority of the survey were glad that their child underwent epilepsy surgery. Fourteen of 34 caregivers that commented on surgery timing wished their child had undergone epilepsy surgery earlier. Epilepsy with a duration of 23.5 months [interquartile range (IQR), 11.1 to 32.2 months, N = 14] prior to surgery was associated with caregiver dissatisfaction and was twice as long compared with caregivers who were satisfied with the timing of surgery (10 months, IQR, 7 to 17.3 months, p = 0.03). Caregivers were willing to accept a lower likelihood of seizure freedom and improvement than what they felt was likely from the preoperative discussions with their physicians. Forty caregivers rated various neurology physician factors as very important in their decision to undergo surgery: neurologist's attitude toward epilepsy surgery, experience with epilepsy surgery, and discussions around the risks of having and not having epilepsy surgery. Optimizing the caregiver-physician relationship can help facilitate early surgery referral and caregiver perception of surgery, potentially preventing delays to surgery and improved caregiver satisfaction.