Abstracts

Rationale:
Epilepsy surgery is successful in the majority of tuberous sclerosis complex (TSC) patients, with high rates of postoperative seizure reduction and seizure freedom. Epilepsy surgery is recommended after failing trials of two anti-seizure medications; however, this is rare in clinical practice. We hypothesized that understanding caregiver’s perspective on the path they took to epilepsy surgery would inform possible changes in clinical practice and future research to increase utilization and earlier use of surgery.
Method:
A questionnaire approved by the institutional review board at Stanford University was developed to assess caregivers’ perspectives on epilepsy surgery in TSC patients. Caregivers of patients who were under the age of 18 years old at the time of epilepsy surgery were asked to participate. The survey consisted of 103 questions and included a combination of different types of questions. Participants were recruited both online and in person at Stanford Children’s Health. Recruitment materials was distributed by the Tuberous Sclerosis Alliance including a flyer with a survey link to the questionnaire, which was posted on their website, email newsletter, and Facebook page. There were no incentives offered for participation in the study and online consent was obtained prior to start of the questionnaire. Data was collected between September and December 2019.
Results:
Forty-six (56%) respondents answered over 90% of the questionnaire and were used in the analysis. Epilepsy surgeries were carried out in 25 centers across the United States. All patients had seizure onset before 3 years of age with average onset at 6.03 ± 6.81 months. Frequency of seizures ranged widely with an average of 39.45 seizures daily. The majority of patients (25/46) had experienced status epilepticus; the longest ever seizure duration ranged from 30 seconds to 10 hours with an average of 57.55 minutes. On average, 5.96 anti-seizure medications were trialed before surgery. All 46 caregivers that filled out the majority of the survey were glad that their child underwent epilepsy surgery. Eighty-five percent of caregivers answered questions regarding timing to surgery. Caregivers first discussed epilepsy surgery with their physician on average 1 year after epilepsy onset 12.79 ± 12.17, months ± standard deviation, and were referred for surgical evaluation 3.22 ± 5.41 months later. The average duration of time from epilepsy surgery referral to first epilepsy surgery was 4.28 ± 4.07months, with a wide range 0.2-66 months. Fourteen of 34 caregivers that commented on surgery timing wished their child had undergone epilepsy surgery earlier and had epilepsy for 21.36 ± 17.54 months, N=14  prior to surgery referral, versus 10.34 ± 8.11 months N=20 p=0.03 compared to caregivers who were satisfied with surgery timing. 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 the following neurology physician factors as very important in their decision to undergo surgery: neurologist’s attitude towards epilepsy surgery, experience with epilepsy surgery, and discussions around the risks of having and not having epilepsy surgery.
Conclusion:
A high rate of satisfaction with epilepsy surgery was found.  No patients had surgery after only trying 2 anti-seizure medications. The duration of epilepsy was half as long in caregivers satisfied with the timing of epilepsy surgery.  We propose that 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 with surgical timing.  
Funding:
:NA