摘要
目的 了解我国散发型克-雅病患者的医疗护理情况及其与生存时间的关系.方法 采用回顾性分析2021年1月1日至2022年12月31日期间经我国克-雅病监测网络诊断的150例散发型克-雅病患者,对家属进行电话随访获得患者确诊后的护理、治疗情况及生存情况.通过寿命表法估算生存率,Kaplan-Meier法计算中位生存时间、95％CI,log-rank法比较不同组间生存时间差异以及通过COX比例风险回归模型多因素分析关于患者生存时间的影响因素.结果 150例散发型克-雅病患者中位生存时间为6个月(95％CI:4.621～7.379),2、6、12、18个月的累积生存率分别为62％、39％、22％、9％;单因素分析结果显示,首发症状有无皮质性失明、是否进行呼吸支持(氧疗)、是否进行辅助药物治疗以及是否进行管饲(鼻饲),组间生存时间差异比较P＜0.1;多因素COX回归分析结果显示,未进行辅助药物治疗的患者死亡风险是有辅助药物治疗患者的1.429倍(95.0％CI:1.014～2.014),未使用管饲(鼻饲)患者的死亡风险是使用管饲(鼻饲)患者的1.479倍(95.0％CI:1.052～2.081).结论 是否进行辅助药物治疗、是否使用管饲(鼻饲)是影响散发型克-雅病患者生存时间的因素,进行适当的辅助药物治疗和管饲(鼻饲)可有助于散发型克-雅病患者延长生存时间.
Abstract
Objective To understand the medical care of patients with sporadic Creutzfeldt-Jakob disease in China and its relationship with survival time.Methods A retrospective analysis was performed on data of 150 patients with sporadic Creutzfeldt-Jakob disease diagnosed by China's Creutzfeldt-Jakob Disease Surveillance Network during the period of January 1,2021 to December 31,2022 in this study,and telephone follow-up with family members was used to obtain information of the patients'care,treatment,and survival after diagnosis.Survival was estimated by life table method,median survival time and 95％confidence interval(CI)were calculated by Kaplan-Meier method,log-rank method was used to compare the difference in survival time between different groups,and multifactorial analysis was performed by COX proportional risk regression model regarding the influencing factors on patients'survival time.Results The median survival time of 150 patients with sporadic Creutzfeldt-Jakob disease was 6 months,and the cumulative lifetime survival rates at 2,6,12,and 18 months were 62％,39％,22％,and 9％,respectively.The result of univariate analysis showed that the differences in survival time between groups with the presence or absence of cortical blindness in the first symptom,the presence or absence of respiratory support(oxygen therapy),the presence or absence of adjunctive medication,and the presence or absence of tube feeding(nasogastric)were meaningful(P＜0.1).Multifactorial COX regression analysis showed that the risk of death in patients without adjuvant medication was 1.429 times higher than that in patients with adjuvant medication(95.0％CI:1.014-2.014),and the risk of death in patients without tube feeding(nasal feeding)was 1.479 times higher than that in patients with tube feeding(nasal feeding)(95％CI:1.052-2.081).Conclusions Whether or not adjuvant medication is administered and whether or not tube feeding(nasogastric)is used are factors that affect survival time in patients with sporadic Creutzfeldt-Jakob disease,and the administration of appropriate adjuvant medication and tube feeding(nasogastric)may contribute to prolonging survival time in patients with sporadic Creutzfeldt-Jakob disease.
基金项目
传染病预防控制国家重点实验室课题(2021SKLID101)
传染病预防控制国家重点实验室课题(2019SKLID501)
NETL
NSTL
万方数据