[P2-82] Sudden Unexpected Death in Epilepsy (SUDEP) information provision to parents of Malaysian children with epilepsy (CWE)
Epilepsy is a common neurological disorder with a risk of sudden death of 20 times higher than the general population. Although several guidelines advocate SUDEP information provision to parents of CWE, in Malaysia there are no guidelines recommending SUDEP information provision to patients with epilepsy. This prospective repeated questionnaire survey assessed the impact of SUDEP information provision on parents of CWE attending the paediatric neurology clinic in University Malaya Medical Centre was done at 2 different time points (immediately after information provision: TP1 and during follow-up appointment 3-6 months later: TP2) from June 2014 to June 2015. 126 parents of CWE were recruited. Only 39 (31%) heard of SUDEP previously. At TP2 vast majority (99.2%) retained the provided SUDEP information. 90 (71.4%) felt positive with the discussion at TP1 and 91 (72.2%) felt positive at TP2. Despite the perceived impact SUDEP information had on parental social and employment functions, as well as children's physical, emotional, social and education functions, majority of them (90.5% at TP1, 88.1% at TP2) recommended that parents of CWE should receive SUDEP information. Nevertheless only 69.8% of parents at TP1 and 77% at TP2 felt that it should be given to the child. Only 57.9% of parents at TP 1 and 62.7% at TP2 planned to inform their child about SUDEP. This is the first Asian study to date evaluating the usefulness of SUDEP information provision. Vast majority of Malaysian parents of CWE wanted to know about SUDEP and felt positive after the SUDEP discussion. SUDEP information provision empowers parents and has an impact in their life. SUDEP counseling should form part of the standards of care in managing Malaysian CWE.