Catherine L. Auriemma is a pulmonary and critical care fellow, Division of Pulmonary, Allergy, and Critical Care Medicine, Department of Medicine; Palliative and Advanced Illness Research (PAIR) Center; and Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia.
Michael O. Harhay is a biostatistician, PAIR Center; and Department of Biostatistics, Epidemiology and Informatics, Perelman School of Medicine, University of Pennsylvania.
Am J Crit Care. 2021 Jan 1;30(1):11-20. doi: 10.4037/ajcc2021398.
Despite increased emphasis on providing higher-quality patient- and family-centered care in the intensive care unit (ICU), there are no widely accepted definitions of such care in the ICU.
To determine (1) aspects of care that patients and families valued during their ICU encounter, (2) outcomes that patients and families prioritized after hospital discharge, and (3) outcomes perceived as equivalent to or worse than death.
Semistructured interviews (n = 49) of former patients of an urban, academic medical ICU and their family members. Two investigators reviewed all transcripts line by line to identify key concepts. Codes were created and defined in a codebook with decision rules for their application and were analyzed using qualitative content analysis.
Salient themes were identified and grouped into 2 major categories: (1) processes of care within the ICU- communication, patient comfort, and a sense that the medical team was "doing everything" (ie, providing exhaustive medical care) and (2) patient and surrogate outcomes after the ICU-survival, quality of life, physical function, and cognitive function. Several outcomes were deemed worse than death: severe cognitive/physical disability, dependence on medical machinery/equipment, and severe/constant pain.
Although survival was important, most participants qualified this preference. Simple measures of mortality rates may not represent patient- or family-centered outcomes in evaluations of ICU-based interventions, and new measures that incorporate functional outcomes and patients' and family members' views of life quality are necessary to promote patient-centered, evidence-based care.
尽管重症监护病房（ICU）越来越强调提供更高质量的以患者和家庭为中心的护理，但 ICU 中仍没有广泛接受的此类护理定义。
确定（1）患者和家属在 ICU 期间重视的护理方面，（2）患者和家属出院后优先考虑的结果，以及（3）被认为等同于或差于死亡的结果。
对城市学术医疗 ICU 的前患者及其家属进行半结构化访谈（n=49）。两名研究人员逐行审查所有转录本，以确定关键概念。使用决策规则创建和定义代码，并在代码簿中定义代码，然后使用定性内容分析进行分析。
确定并分为 2 个主要类别：（1）ICU 内的护理过程——沟通、患者舒适度以及医疗团队“尽一切努力”（即提供全面的医疗护理）的感觉，以及（2）ICU 后的患者和替代者结果——存活、生活质量、身体功能和认知功能。一些结果被认为比死亡更糟：严重的认知/身体残疾、对医疗机械/设备的依赖以及严重/持续的疼痛。
尽管存活很重要，但大多数参与者都对这种偏好进行了限定。死亡率等简单的衡量标准可能无法代表 ICU 干预措施评估中的以患者或家庭为中心的结果，需要新的措施来纳入功能结果和患者及其家属对生活质量的看法，以促进以患者为中心的循证护理。
