Sudden unexpected death in epilepsy (SUDEP) is an important cause of mortality in epilepsy. To date, there is only one published UK study evaluating information provision of SUDEP among parents of children with epilepsy (CWE), and there are no studies published from Asia. Although SUDEP information provision is recommended among parents of CWE, it is uncertain if these recommendations are applicable to Asian countries due to the different cultural attitude towards epilepsy. Our prospective cohort study consisted of multiethnic parents of children with epilepsy (CWE) seen in a tertiary hospital in Malaysia. Information on SUDEP was delivered to parents using an epilepsy educational software program. Participants completed a set of standardized questionnaire and Depression Anxiety Stress Scales-Short Form (DASS-21) immediately after and retested 3-6months after the SUDEP information provision. A total of 127 parents (84 mothers) participated in the study. The CWE consisted of 3 ethnic groups (38% Malay, 30% Chinese, 32% Indian) with a mean age of 9.6years. Majority (70.9%) felt positive after SUDEP information provision, 90.6% wanted SUDEP discussion for themselves with 70.1% wanted SUDEP discussion with their child, and a lower proportion (58.3%) would discuss SUDEP with their child. None of the participants reported increased symptoms of depression, stress or anxiety attributed to SUDEP information provision. Most parents took steps to reduce SUDEP risk, and most parents did not report an impact on their own functioning. However, there was an increase in parental report over time of impact on their child's functioning following SUDEP information (P<0.05). In conclusion, most Malaysian parents of CWE wanted SUDEP information. Following SUDEP information disclosure, majority did not report negative emotions; however, an increase in parents over time reported an impact on their child. Our findings reiterate that provision of SUDEP information should form part of care of CWE and parents should receive ongoing support as they undergo a period of parenting adjustment when dealing with the information provided.
We report on a retrospective study of maternal deaths in Malaysia that occurred within 24 hours of delivery, abortion or operative termination of the pregnancy (defined as sudden deaths) in the years 1995-1996. There were 131 sudden maternal deaths (20.6% of all maternal deaths); postpartum hemorrhage, obstetric embolisms, trauma and hypertensive disorders of pregnancy were the main causes. There was a disproportionately increased risk of sudden maternal deaths in the Chinese and the 'other bumiputra' racial groups. The proportion of mothers who had no obstetric risk factors in the pregnancy that led to death was 16.8%. Fourteen mothers died in transit Twenty mothers died after a cesarean section. The findings of this review emphasize the fact that caregivers in obstetrics need to be forever vigilant. All maternity staff need to be well trained in emergency care and there needs to be quick referral to centers that can provide expertise in handling these emergencies.