Abstracts

Rationale: Epilepsy surgery has been shown to improve the patients' quality of life (QOL). Little is known though about its effect on the QOL of their caregivers. Methods: 26 patients and 13 caregivers participated in this prospective study conducted at MGH from 09/2009 till 06/2011. All patients underwent Epilepsy surgery for medically refractory Epilepsy. The patients completed Epilepsy directed QOL (QOLIE-31) and psychological (Beck's depression-BDI and anxiety inventory-BAI) questionnaires before and after surgery. Their participating caregivers completed generic health related QOL (SF36v2) and disease burden (Zarit burden inventory-ZBI) questionnaires before and after surgery. Demographic data for all participants and caregivers and disease/surgery related data for the patients were collected. Statistical analysis was performed to compare the patients' and caregivers' QOL before and after surgery, using Fischer's exact/paired t-test for categorical/continuous data or their non parametric equivalents. Results: Out of 26 patients, 13 (50%) were male with a mean age of 37 years. The majority were employed (69%), of higher education (85%) and were living with relatives (92%). The mean age of onset of their disease was 20 years of age and the mean duration was 18 years. Pre-operatively they had on average 4 seizures/month, and they were on average on 2.2 antiepileptic drugs (AEDs). Most patients suffered from symptomatic partial epilepsy (77%). 54% of them underwent a left anterior temporal lobectomy (ATL), 24% right ATL and the rest extra-temporal resections. On follow up at approximately 9 months, 69% had a surgical outcome of Engel class I, 23% of class II and 8% class IV. Postoperatively, the patients remained on average on 1.9 AEDs. There was a statistically significant improvement for both the aggregate QOLIE-31 score and all its subscales. Similarly BAI but not BDI scores were statistically better post surgery. 96% of the patients felt that the decision to go through surgery was worthwhile. Out of 16 caregivers who participated in the study, 11 (69%) were female with a mean age of 47 years. 50% were spouses, 37.5% were parents and the rest siblings of the patients. The majority were employed (87.5%) and of higher education (87.5%). 50% of them stated that their overall time devoted to patient's care decreased after surgery and 50% that it remained unchanged. The ZBI and the physical component of their QOL (SF36v2, PCS) scores did not significantly vary before and after surgery but the mental component of their QOL (SF36v2, MCS) showed statistically significant improvement. 75% of caregivers deemed their QOL better post surgery vs 19% similar. 94% of the caregivers felt that the decision to go through surgery was worthwhile. Conclusions: Successful Epilepsy surgery has a positive impact not only to the patients' QOL but also to their caregivers. To our knowledge, this is the first study to systematically address the impact of Epilepsy surgery on the caregivers providing additional leverage to Epilepsy surgery as the optimal treatment modality in carefully selected, medication refractory patients.