Kaddumukasa Mark, Mwesiga Emmanuel, Sewankambo Nelson, Blixen Carol, Lhatoo Samden, Sajatovic Martha, Katabira Elly
Department of Medicine College of Health Sciences Makerere University Kampala Uganda.
Department of Psychiatry College of Health Sciences Makerere University Kampala Uganda.
Epilepsia Open. 2019 Dec 26;5(1):80-85. doi: 10.1002/epi4.12374. eCollection 2020 Mar.
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.
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.
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.
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.
本研究的目的是评估乌干达癫痫患者及提供癫痫护理的医护人员对癫痫性猝死（SUDEP）的认知水平和态度。
这项对48名癫痫患者和19名癫痫护理提供者的横断面研究使用了一份特制问卷，以评估癫痫和SUDEP知识、SUDEP讨论频率、不讨论SUDEP的原因、SUDEP讨论时机以及患者对获得SUDEP信息的反应。
癫痫患者样本的中位年龄为25岁（四分位间距；19 - 34岁），10名（20.8%）为男性，癫痫发病的中位年龄为12岁（四分位间距；6 - 18岁）。一半的癫痫患者报告称他们从未听说过SUDEP。大多数癫痫患者希望获得有关SUDEP的详细信息，并且更倾向于在后续就诊时获取该信息。医护人员样本的平均年龄为35.7（22.8）岁，12名（63.2%）为男性，其中包括4名医生（21.1%）。只有15%（3/20）的提供者与患者讨论过SUDEP，而85%（17/20）从未讨论过。不讨论SUDEP的主要原因是对SUDEP了解不足（89.5%）以及没有足够的支持网络（30%）。讨论过SUDEP的提供者（100%）报告称负面反应是最常见的患者反应。
在这个乌干达样本中，大多数癫痫患者不了解SUDEP，癫痫护理提供者很少与患者或患者护理人员讨论SUDEP。对SUDEP讨论的负面反应很常见，但并非普遍存在。迫切需要在诊所和目标社区开展针对SUDEP的癫痫教育项目。
