Abstracts

Rationale: While carer burden in many chronic illnesses has been the subject of increasing attention in recent years, carer burden in epilepsy has not been adequately addressed in the literature to date. There is little information regarding the determinants of carer burden in epilepsy. The popular generic instruments such as Caregiver Burden Inventory (CBI) do not adequately address unique issues posed by epilepsy such as seizure related aspects of carer burden. The purpose of this study was to develop a carer burden instrument that specifically addressed aspects of caring for people with epilepsy and to study carer burden in epilepsy and its predictors. Methods: The BoSS (Burden of Seizure Scale), was developed specifically to evaluate carer burden in epilepsy. It was developed after interviewing clinicians and researchers working in our Comprehensive Epilepsy Programme and finalised after interviews with carers. Patients admitted to video EEG monitoring unit were invited to participate in the study. Participating carers were asked to fill out BoSS, CBI and HADS (Hospital Anxiety and Depression) questionnaires. Clinical and psychosocial data, latter using HADS, QOLIE-89 (Quality of Life in Epilepsy) and NuCOG (Cognitive Assessment Tool) were collected from people with epilepsy. Validity and sensitivity of BoSS were determined using various statistical methods as detailed below. Patient variables associated with carer burden were analysed using stepwise regression and correlation analysis. Results: 30 patients and carers participated in this pilot study. BoSS showed good feasibility, face validity and concurrent validity (strong correlation with CBI. R= 0.89, p < 0.001). Reliability was supported by high internal consistency (Cronbach’s alpha = 0.92) and good item-total correlations. BoSS was able to capture seizure related aspects of carer burden not addressed by CBI and was more sensitive in addressing burden in this population. Mean CBI and BoSS scores were 18 (/100) and 31.5 (/80) respectively. Correlational analysis (Spearman’s r) showed significant (<0.01) correlation between CBI and BoSS scores and the carers HADS scores and the patients HADS, NuCOG and QOLIE-89 scores, with no such relationship shown with syndrome type, seizure type or other clinical variables.