TY - T1的蛛网膜下腔出血病人改良Rankin规模的相关性研究摩根富林明——神经学乔-神经病学SP - e1565 LP - - 10.1212 / WNL e1573做。首页0000000000206879六世- 100 - 15盟Naomi Niznick AU -维多利亚Saigle AU -玛丽亚·路易萨马蒂盟约瑟芬Laframboise盟晓惠咋AU -克里斯安德森盟贾斯汀Presseau AU -迈克尔快滑步盟Lauralyn麦金太尔非盟-迪恩•弗格森AU - Alexis f .鲟鳇鱼盟-弗朗索瓦Lauzier AU -斯蒂芬a . Mayer盟Shouri Lahiri AU -蒂姆·拉姆齐盟Shane英语盟APOC调查员和加拿大重症监护试验集团Y1 - 2023/04/11 UR - //www.ez-admanager.com/content/100/15/e1565.abstract N2 -背景和目标有明显异质性的报告结果的措施在动脉瘤性蛛网膜下腔出血(aSAH表示)的研究。首页改良Rankin规模(夫人)是最常报道的功能结果。专注于身体残疾夫人;然而,许多幸存者aSAH表示在其他领域sequalae经验,和夫人aSAH表示幸存者可能因此不捕获的结果重要。本研究的目的是评估的临床相关性夫人的研究结果衡量人们生活aSAH表示经验。方法我们进行了一次国际横断面调查355年aSAH表示幸存者,家庭成员和护理人员评估patient-perceived结果与太太太太是评估之前使用一个基于web的工具进行验证。结果响应率为60%;受访者来自7大洲aSAH表示幸存者组成的86%和14%的家庭成员/照顾者。自我评价结果之间的协议和夫人很穷(卡巴0.26[可信区间0.14 - -0.39])。172受访者自我评价有很好的aSAH表示结果,122名(71%)0 - 2分的太太大约19%的受访者有好的结果,基于测量0 - 2分的夫人,自我评价,有一个贫穷的aSAH表示结果。 When the mRS score was dichotomized as 0–3 corresponding to a good outcome, agreement between the score and self-assessed outcome remained poor with a Kappa score of 0.40 (CI 0.20–0.60). Approximately 30% of respondents believed that the mRS should not be used as an outcome measure in future aSAH trials.Discussion The findings suggest that there is poor agreement between aSAH survivors' self-assessed outcome, their actual mRS score, and the dichotomization of the mRS score into good/poor outcomes. Patient-centered and patient-informed outcome measurement tools are needed to guide the aSAH research agenda.aSAH=aneurysmal subarachnoid hemorrhage; CDEs=common data elements; mRS=modified Rankin scale; NINDS=National Institute of Neurological Disorders and Stroke; PROMs=patient-reported outcome measures; SAH=subarachnoid hemorrhage ER -