Knowledge and attitudes about sudden death in epilepsy among people living with epilepsy and their healthcare providers in Mulago Hospital, Uganda: A cross‐sectional study

OBJECTIVE: The objective of the study was to assess level of knowledge and attitudes of SUDEP among people living with epilepsy (PLWE) and healthcare workers providing epilepsy care in Uganda. METHODS: This cross‐sectional study of 48 PLWE and 19 epilepsy care providers used a tailored questionnaire to evaluate epilepsy and SUDEP knowledge, frequency of SUDEP discussion, reasons for not discussing SUDEP, timing of SUDEP discussions, and perceived patient reactions to being provided information on SUDEP. RESULTS: Median PLWE sample age was 25 (IQR; 19‐34) years, 10 (20.8%) were male, median age of onset of epilepsy 12 (IQR; 6‐18) years. Half of the PLWE reported that they had never heard of SUDEP. Most PLWE desired detailed information regarding SUDEP and preferred this information during the subsequent visits. Healthcare provider sample mean age was 35.7 (22.8) years, 12 (63.2%) were male and composed of 4 physicians (21.1%). Only 15% (3/20) of providers discussed SUDEP with their patients while 85% (17/20) have never discussed it. The main reasons for not discussing SUDEP were not knowing enough about SUDEP (89.5%) and no adequate support network available (30%). Providers that discussed SUDEP (100%) reported that negative reactions were the most common patient response. SIGNIFICANCE: In this Ugandan sample, most PLWE are not aware of SUDEP and epilepsy care providers rarely discuss SUDEP with their patients or patient caregivers. Negative reactions to SUDEP discussions are common but not universal. There is an urgent need for epilepsy educational programs in clinics and targeted communities addressing SUDEP.