Young Charlotte, Shankar Rohit, Henley William, Rose Adam, Cheatle Katie, Sander Josemir W
Cornwall Partnership NHS Foundation Trust, Threemilestone Industrial Estate, Truro TR4 9LD, UK.
Cornwall Partnership NHS Foundation Trust, Threemilestone Industrial Estate, Truro TR4 9LD, UK; Exeter Medical School, Knowledge Spa, Royal Cornwall Hospital, Truro, Cornwall TR1 3HD, UK.
Epilepsy Behav. 2018 Sep;86:200-203. doi: 10.1016/j.yebeh.2018.06.040. Epub 2018 Jul 13.
Sudden unexpected death in epilepsy (SUDEP) is a leading cause of death among people with chronic epilepsy. People with intellectual disability (ID) are overrepresented in this population. The SUDEP and Seizure Safety Checklist ("Checklist") is a tool to discuss risk factors influencing seizures and the risk of SUDEP. It includes questions about the availability of nocturnal monitoring. In Cornwall UK, people with epilepsy and ID and their relatives and carers are routinely advised to consider nocturnal surveillance to reduce harm from potential nocturnal seizures. We assessed the retention of advice provided on nocturnal monitoring and if there were differences between those in residential care and those living with their families.
A postal questionnaire was sent to carers of all people with epilepsy and ID in Cornwall followed by the adult specialist ID epilepsy service. All those who were contacted had received the same advice on SUDEP and nocturnal monitoring at least once in the past year. Each person was categorized into living in a residential setting or with their family group. Intergroup differences were compared using Fisher's exact test.
Carers for 170 people were contacted and 121 responded (71%). The family group had statistically more nocturnal seizures than the residential group. While there was no difference in the awareness of SUDEP, the groups differed in their recollection of the person-centered discussion of risk with carers in residential setting being less aware. Where nocturnal monitoring advice was given, it was followed, and previously unknown seizures were identified in 75%.
Carers in residential settings are less likely to recall specific person-centered discussion of risks to the individual they support as compared with those living with families although general awareness of SUDEP and implementing advice such as nocturnal monitoring is present equally in both groups. In improving detection of nocturnal seizures, audio monitoring may be a useful strategy to reduce risk of harm for people with ID.
癫痫性猝死（SUDEP）是慢性癫痫患者的主要死因。智障（ID）人群在该群体中占比过高。SUDEP与癫痫发作安全检查表（“检查表”）是一种用于讨论影响癫痫发作的风险因素以及SUDEP风险的工具。它包括有关夜间监测可用性的问题。在英国康沃尔郡，癫痫和智障患者及其亲属和护理人员通常被建议考虑进行夜间监测，以减少潜在夜间癫痫发作造成的伤害。我们评估了关于夜间监测的建议的留存情况，以及住在福利院的人和与家人同住的人之间是否存在差异。
向康沃尔郡所有癫痫和智障患者的护理人员发送了一份邮政问卷，随后由成人专科ID癫痫服务机构跟进。所有被联系的人在过去一年中至少接受过一次关于SUDEP和夜间监测的相同建议。每个人被分类为居住在福利院或与家人同住。使用Fisher精确检验比较组间差异。
联系了170人的护理人员，121人回复（71%）。与居住组相比，家庭组的夜间癫痫发作在统计学上更多。虽然对SUDEP的认识没有差异，但两组在对以患者为中心的风险讨论的回忆上存在差异，居住组的护理人员对此认识较少。在给出夜间监测建议的情况下，建议得到了遵循，75%的人发现了之前未知的癫痫发作。
与与家人同住的护理人员相比，居住在福利院的护理人员不太可能回忆起针对他们所支持的个体的以患者为中心的具体风险讨论，尽管两组对SUDEP的总体认识以及实施夜间监测等建议的情况相同。在改善夜间癫痫发作的检测方面，音频监测可能是降低智障患者伤害风险的有用策略。
