Abstracts

Rationale: Many families of children with medically refractory epilepsy deemed good surgical candidates decline surgery for a variety of reasons. In the adult literature, patients who were good surgical candidates and declined surgery were more anxious, less compliant with physician recommendations, had more comorbid psychiatric disorders, and were ""less bothered"" by their epilepsy¹. Little is published regarding the pediatric population. The current study examines factors affecting parent decision-making in consideration for pediatric epilepsy surgery. ¹Anderson CT, et al. Surgery: factors that affect patient decision-making in choosing or deferring a procedure. Epilepsy Res Treat. Published online Sep 16, 2013. Methods: A retrospective chart review was performed including all patients presented in pediatric epilepsy surgery conference at a single institution in the past five years and offered a curative or palliative surgical treatment option. Patients whose parents or guardians declined surgery were identified. Data obtained included patient age, gender, frequency of seizures, surgical procedure offered, documented reason(s) for declining surgery, and prior epilepsy surgical evaluation or surgery. Descriptive statistics were used in analyzing data from pediatric patients who did not undergo epilepsy surgery. Results: Out of 157 patients with medically refractory epilepsy who met selection criteria, 31 patients' families chose not to pursue surgical treatment of their children's epilepsy around the time of conference presentation. The average patient age was 9.6 years (9.9 years, female and 9.5 years, male). Twenty-two (71%) patients were male and 9 (29%) were female. The most frequent documented reason for not pursuing surgery was improved seizure frequency after medication changes (9 patients, 29%), with 4 patients (13%) experiencing complete seizure freedom. Four patients (13%) declined surgery due to potential deficits, and 4 patients (13%) cited a low chance for seizure freedom as a major factor. Five patients had more than one documented reason. The majority of patients who declined surgery were offered palliative procedures (25 patients, 81%). Nearly one-fifth (22 patients, 19%) of patients whose parents declined surgery had been evaluated at an outside epilepsy center and 5 patients (16%) had prior epilepsy surgery. Conclusions: Our results suggest a major reason for parents to decline epilepsy surgery is significant clinical improvement with medication changes. Additional reasons include the potential for new neurological deficits and a low likelihood for seizure freedom after surgery. Most significantly, these results encourage epilepsy physicians to address these factors with families as early and accurately as possible, and to limit high-risk or potentially unnecessary diagnostic procedures in certain patients. Moreover, adjusting medications during an active surgical evaluation may lead to clinical improvements. Further studies will include obtaining questionnaires from families both pursuing and declining epilepsy surgical treatment, and comparing the characteristics of these groups.