Abstracts

Rationale: There is a need to understand why pediatric patients with medically refractory localization-related epilepsy have a delay in surgical treatment. By better understanding the caregiver’s perspective of the epilepsy surgery evaluation process, the epilepsy community can provide better guidance to caregivers of children with medically refractory epilepsy and improve outcomes. Methods: Using an electronic questionnaire distributed via Facebook support groups and in clinic, we surveyed caregivers whose child underwent epilepsy surgery on their impression of the surgical evaluation and outcome. Demographics, epilepsy history, medication trials, timing of surgery, satisfaction with surgery and its timing, and acceptance of post-surgical deficits were examined. Results: 58 respondents answered most questions, from 6 countries and 35 epilepsy surgical centers. Epilepsy onset in this cohort was early (Average ±Standard Deviation (SD), 9.0 months ±20.2). Average age at first surgery was approximately 4 years of age (average ±SD, 46.6 months ±59.3). Patients had a mixture of seizure semiologies, and had failed an average of 6.43 medication trials before surgery. Several had tried the ketogenic diet and vagal nerve stimulator as well. Nearly all patients (97%) had an abnormal MRI.30 of 58 caregivers wished they had undergone epilepsy surgery earlier, compared to 20 who said they felt surgery was done at the appropriate time, and 8 were unsure. Caregivers who wished they had performed surgery sooner had a significantly longer duration of epilepsy prior to the surgery, 44.1 months ±71.7, (average ±SD, N=27) compared to those who felt content with the timing of the surgery, 12.8 months ±14.1, (average ± SD, N=20), Welch’s t-test, p=0.0034. After dividing by caregiver satisfaction with surgery timing, only time from referral to surgery evaluation was significantly different, Wilcoxon rank-sum test, p=0.004. Caregivers were willing to accept a lower likelihood of seizure freedom than their physician had reported was likely with surgery; caregiver average of 46.6% (SD±21.6, N=39); physician reported average of 67.4%, (SD±18.8, N=45), Welch’s t-test, p Conclusions: Most caregivers were glad their child underwent epilepsy surgery, and the majority wished their child had undergone surgery earlier. Those who were not satisfied with the timing of surgery had greater than a 3x longer duration of epilepsy prior to surgery. A very high percentage of caregivers would have accepted post-operative neurologic deficits in any domain. They also were willing to accept a lower rate of seizure freedom than their doctors reported likely. Caregivers supported earlier and more aggressive surgical approaches with higher risk of morbidity. Future studies on how to educate caregivers about the benefits and risks of epilepsy surgery and improve the speed of the pipeline to epilepsy surgery are needed to improve caregiver satisfaction with this process. Funding: Lucile Packard Children’s Hospital Child Neurology Fund.