Epilepsy-related deaths: An Australian survey of the experiences and needs of people bereaved by epilepsy.

PURPOSE: This study explores the experiences and needs of bereaved family and friends following an epilepsy-related death in Australia. METHOD: An online survey was used to collect demographic details of the person with epilepsy, epilepsy status, time since the death, satisfaction with service providers at the time of death, follow-up support, perceptions on how well the death was explained, and gaps in support or services. RESULTS: The survey was completed by 101 respondents describing 90 deceased individuals. Mean age at death was 32.1 years, with causes of death including SUDEP, epilepsy, drowning, cardiac arrest, asphyxiation, and motor vehicle accidents. Over half of the respondents indicated that they did not know, prior to the death, people could die of epilepsy. In addition, 38% indicated the death had not been adequately explained to them. Comments revealed services and supports which should be available following a death, and recommendations for existing epilepsy support services which might help to prevent future deaths. CONCLUSION: Findings highlight the need to improve community understanding and support for those affected by epilepsy and to promote informed risk assessment and communication amongst patients, families and health professionals. People bereaved by epilepsy require both immediate and long-term epilepsy-specific information and support from professionals, informal communities and peer supporters.

The Liverpool Adverse Events Profile: relation to AED use and mood.

PURPOSE: The Liverpool Adverse Events Profile (LAEP) is used as a systematic measure of adverse effects from antiepileptic drugs (AEDs). This study evaluated LAEP in newly diagnosed seizure patients, and examined the relation between LAEP, anxiety, and depression. METHODS: Seizure patients seen in the two First Seizure Clinics were categorized into group A (AEDs commenced after assessment), group B (AEDs commenced before assessment), and group C (no AEDs). LAEP and the Hospital Anxiety and Depression Scale (HADS) were completed at baseline (n=164) and 3 months (n=103). Each LAEP symptom was assessed for baseline frequency, 3-month frequency, and frequency change over a 3-month period. Global scores for LAEP and HADS were analysed at baseline and 3 months. RESULTS: Symptom-reporting patterns were similar between groups. However, increased frequency over a 3-month period occurred for 12 symptoms in group A, 10 in group B, and one in group C. Global LAEP and HADS showed no significant group differences at baseline or changes over a 3-month period. Multiple regression revealed that HADS scores predicted LAEP global scores better than did AED status. Multivariate analyses of variance demonstrated that increased reporting of 16 of 19 LAEP symptoms was significantly related to higher anxiety and depression rates. CONCLUSIONS: In a First Seizure Clinic, LAEP detects changes in specific symptom frequencies when used as a repeated, symptom-by-symptom measure. Increased symptom frequency is associated with diagnostic category/AED treatment, anxiety, and depression. Global LAEP scores do not illustrate differences in symptom reporting between patients.