Abstracts

Rationale: Studies have been conducted on sudden unexpected death in epilepsy (SUDEP) disclosure aimed at nurses, doctors, and parents of epilepsy patients, but none have directly addressed patient's perspective. Thus, counseling patients on SUDEP poses some challenges to healthcare providers. Our study aimed to investigate whether patients want to know about SUDEP, to identify their preferred timing and method of disclosure, and to assess its impact on emotional and psychosocial well-being, and on epilepsy self-management.Methods: Epilepsy patients were screened for participation by the doctor during any clinic visit. Verbal consent for participation was asked. Any minor was accompanied by a parent or guardian. SUDEP handout was provided, which was discussed in detail by the doctor. Participants were instructed to complete survey questionnaire within two weeks. There were 11 questions, covering preferred method(s) and timing of disclosure, type(s) of patient who should not receive disclosure, most important SUDEP information, and disclosure s effect on epilepsy self-management, and emotional and psychosocial functions.Results: Patients were of ages 15 to 73 years, and without diagnosis of cognitive impairment. Eighteen patients were screened for participation, and 15 consented to receiving SUDEP information. Four completed survey questionnaire. All four felt they received enough information. Three preferred their provider to discuss SUDEP, while one preferred receiving SUDEP materials. Each had different preferred timing of disclosure. Three felt a family or friend should be present during disclosure. All felt other epilepsy patients, including minors, should receive SUDEP disclosure. However, one felt those younger than 12 years should not receive disclosure. Three felt some patients should not receive disclosure, including patients who chose not to receive information, who may have trouble thinking or understanding information, who have complete seizure freedom, or who have infrequent seizures. One felt anxiety and frustration after disclosure, but qualified these as insignificant given low SUDEP risk, while three reported either absence or no change of negative feelings. None reported worsening of quality of life, job or school performance, or social functions; one reported improved overall quality of life and social functions. One reported improved anti-epileptic drug compliance and decreased sleep deprivation. One reported more frequent sleep deprivation, while the remaining other two reported no change in epilepsy self-management. The most important SUDEP information to them were risks and prevention of SUDEP, followed by the rarity of SUDEP and the knowledge of ongoing studies or research to understand and prevent SUDEP.Conclusions: Fifteen of 18 screened patients consented to receiving SUDEP disclosure. This finding supports practice of routinely disclosing SUDEP information on patients. This study provides insights to patient s perspective on SUDEP disclosure, which may offer guidance to providers. The results generated from this pilot will be added into a larger-scale study.