Schulich School of Medicine and Dentistry, Western University, London, Canada.
Service de Neurologie, Université Libre de Bruxelles-Hôpital Erasme, Brussels, Belgium.
Epilepsy Behav. 2024 Nov;160:110023. doi: 10.1016/j.yebeh.2024.110023. Epub 2024 Sep 5.
The new-onset refractory status epilepticus (NORSE)/febrile infection-related epilepsy syndrome (FIRES) Family Registry contributes to a systematic effort to collect clinical and epidemiological information on individuals affected by NORSE/FIRES. We explore diagnostic and prognostic information provided to patients and their families, their satisfaction with the communication, and utilisation of palliative care services during acute hospitalization. Communication about the diagnosis of NORSE/FIRES to families has improved since the publication of consensus definitions in 2018, with families being more likely to be told about NORSE/FIRES after 2018. Families rate the quality of prognostic information as being moderate. Palliative care services were involved in a minority of patients. Understanding and characterizing the prevalence and satisfaction of diagnostic and prognostic conversations is important for improving overall care, the quality of physician-patient-family relationships, and the recovery process for those affected by NORSE/FIRES.
新起难治性癫痫持续状态（NORSE）/发热相关感染性癫痫综合征（FIRES）家族登记处有助于系统地收集受 NORSE/FIRES 影响的个体的临床和流行病学信息。我们探讨了向患者及其家属提供的诊断和预后信息、他们对沟通的满意度以及在急性住院期间姑息治疗服务的利用情况。自 2018 年共识定义发布以来，NORSE/FIRES 家族的诊断沟通有所改善，2018 年后告知患者 NORSE/FIRES 的可能性更大。家属对预后信息的质量评价为中等。姑息治疗服务仅涉及少数患者。了解和描述诊断和预后对话的普遍性和满意度对于改善整体护理、医患关系质量以及受 NORSE/FIRES 影响的人的康复过程非常重要。
