Dinglas Victor D, Chessare Caroline M, Davis Wesley E, Parker Ann, Friedman Lisa Aronson, Colantuoni Elizabeth, Bingham Clifton O, Turnbull Alison E, Needham Dale M
Outcomes After Critical Illness and Surgery Group, Johns Hopkins University, Baltimore, Maryland, USA.
Division of Pulmonary and Critical Care Medicine, School of Medicine, Johns Hopkins University, Baltimore, Maryland, USA.
Thorax. 2018 Jan;73(1):7-12. doi: 10.1136/thoraxjnl-2017-210234. Epub 2017 Jul 29.
There is heterogeneity among the outcomes evaluated in studies of survivors of acute respiratory failure (ARF).
To evaluate the importance of specific outcome domains to acute respiratory distress syndrome (ARDS) survivors, their family members and clinical researchers.
Nineteen outcome domains were identified from the National Institutes of Health's Patient Reported Outcomes Measurement Information System; WHO's International Classification of Functioning, Disability, and Health; Society of Critical Care Medicine's Post-Intensive Care Syndrome (PICS); as well as patient, clinician and researcher input. We surveyed ARDS survivors, family members and critical care researchers, 279 respondents in total, using a 5-point scale (strongly disagree, disagree, neutral, agree and strongly agree) to rate the importance of measuring each domain in studies of ARF survivors' postdischarge outcomes.
At least 80% of patients and family members supported (ie, rated 'agree' or 'strongly agree') that 15 of the 19 domains should be measured in all future studies. Among researchers, 6 of 19 domains were supported, with researchers less supportive for all domains, except survival (95% vs 72% support). Overall, four domains were supported by all groups: physical function, cognitive function, return to work or prior activities and mental health.
Patient, family and researcher groups supported inclusion of outcome domains that fit within the PICS framework. Patients and family members also supported many additional domains, emphasising the importance of including patients/family, along with researchers, in consensus processes to select core outcome domains for future research studies.
急性呼吸衰竭（ARF）幸存者研究中评估的结果存在异质性。
评估特定结果领域对急性呼吸窘迫综合征（ARDS）幸存者、其家庭成员和临床研究人员的重要性。
从美国国立卫生研究院的患者报告结局测量信息系统、世界卫生组织的《国际功能、残疾和健康分类》、危重病医学会的重症监护后综合征（PICS）以及患者、临床医生和研究人员的意见中确定了19个结果领域。我们对ARDS幸存者、家庭成员和重症监护研究人员进行了调查，共279名受访者，使用5分制（强烈不同意、不同意、中立、同意和强烈同意）来评估在ARF幸存者出院后结局研究中测量每个领域的重要性。
至少80%的患者和家庭成员支持（即评为“同意”或“强烈同意”）在所有未来研究中测量19个领域中的15个。在研究人员中，19个领域中有6个得到支持，研究人员对所有领域的支持度较低，除了生存率（95%对72%的支持）。总体而言，所有组都支持四个领域：身体功能、认知功能、恢复工作或先前活动以及心理健康。
患者、家庭和研究人员团体支持纳入符合PICS框架的结果领域。患者和家庭成员还支持许多其他领域，强调在共识过程中纳入患者/家庭以及研究人员对于选择未来研究的核心结果领域的重要性。
