Abstract：
Aneurysmal subarachnoid haemorrhage (aSAH) is a devastating condition with high mortality and morbidity. The outcome measures used in aSAH clinical research vary making it challenging to compare and combine different studies. Additionally, there may be a mismatch between the outcomes prioritized by patients, caregivers, and health care providers and those selected by researchers. We conducted an international, online, multiple round Delphi study to develop consensus on domains (where a domain is a health concept or aspect) prioritized by key stakeholders including those with lived experience of aSAH, health care providers, and researchers, funders, or industry professionals. One hundred seventy-five people participated in the survey, 59% of whom had lived experience of aSAH. Over three rounds, 32 domains reached the consensus threshold pre-defined as 70% of participants rating the domain as being critically important. During the fourth round, participants ranked the importance of each of these 32 domains. The top ten domains ranked highest to lowest were (1) Cognition and executive function, (2) Aneurysm obliteration, (3) Cerebral infarction, (4) Functional outcomes including ability to walk, (5) Delayed cerebral ischemia, (6) The overall quality of life as reported by the SAH survivor, (7) Changes to emotions or mood (including depression), (8) The basic activities of daily living, (9) Vasospasm, and (10) ICU complications. Our findings confirm that there is a mismatch between domains prioritized by stakeholders and outcomes used in clinical research. Our future work aims to address this mismatch through the development of a core outcome set in aSAH research.
摘要：
动脉瘤性蛛网膜下腔出血（aSAH）是一种高死亡率和高发病率的破坏性疾病。aSAH临床研究中使用的结果指标各不相同，因此比较和组合不同的研究具有挑战性。此外,患者优先考虑的结果之间可能存在不匹配，看护者,以及医疗保健提供者和研究人员选择的人。我们进行了一次国际会议，在线,多轮Delphi研究，以形成领域的共识（其中一个领域是一个健康概念或方面）由主要利益相关者优先考虑，包括那些生活经验的aSAH，卫生保健提供者,和研究人员，资助者,或行业专业人士。一百七十五人参与调查,59%的人有过aSAH的生活经历。经过三轮，32个领域达到了预定义的共识阈值，即70％的参与者将该领域评为至关重要。在第四轮比赛中,参与者对这32个领域中每个领域的重要性进行了排名.排名最高到最低的前十个领域是(1)认知和执行功能，(2)动脉瘤闭塞,(3)脑梗死,（4）功能结果，包括行走能力，(5)迟发性脑缺血,（6）SAH幸存者报告的总体生活质量，（7）情绪或情绪的变化（包括抑郁），（8）日常生活的基本活动，(9)血管痉挛,（10）ICU并发症。我们的发现证实，利益相关者优先考虑的领域与临床研究中使用的结果之间存在不匹配。我们未来的工作旨在通过开发aSAH研究中的核心结果来解决这种不匹配。
