Kross Erin K, Engelberg Ruth A, Shannon Sarah E, Curtis J Randall
Division of Pulmonary and Critical Care Medicine, School of Nursing, University of Washington, Seattle, WA.
Harborview Medical Center, and the Department of Biobehavioral Nursing and Health Systems, School of Nursing, University of Washington, Seattle, WA.
Chest. 2009 Dec;136(6):1496-1502. doi: 10.1378/chest.09-0589. Epub 2009 Jul 17.
After-death surveys are an important source of information about the quality of end-of-life care, but response rates generally are low. Our goal was to understand the potential for nonresponse bias in survey studies of family members after a patient's death in the hospital ICU by identifying differences in patient demographics and delivery of palliative care between patients whose families respond to a survey about end-of-life care and those whose families do not.
We performed a cohort study of patients who died in the ICU at 14 hospitals. Surveys were mailed to family members 1 to 2 months after the patient's death. Chart abstraction was completed on all patients, assessing demographic characteristics and previously validated indicators of palliative care.
Of the 2,016 surveys sent to families, 760 were returned, for a response rate of 38%. Patients whose family members returned the surveys were more likely to be white (88% vs 74%, respectively; p < 0.001); to be older (71 years vs 69 years, respectively; p = 0.015); and to have received more indicators of palliative care, including medical record documentation of family present at death, involvement of spiritual care, and dying after a decision to limit life-sustaining therapies (p < 0.05).
Patients whose family members responded to a survey about end-of-life care were more likely to be white, older, and have indicators of palliative care documented in the medical record. Because these patients likely received higher quality palliative care, these findings suggest that the response bias in end-of-life care research is toward overestimating the quality of palliative care.
ClinicalTrials.gov Identifier: NCT00685893.
死亡后调查是了解临终关怀质量的重要信息来源，但总体回复率较低。我们的目标是通过识别对临终关怀调查做出回应的患者家属与未做出回应的患者家属在患者人口统计学特征和姑息治疗提供情况方面的差异，来了解医院重症监护病房（ICU）患者死亡后家属调查研究中无回应偏差的可能性。
我们对14家医院ICU中死亡的患者进行了一项队列研究。在患者死亡后1至2个月向其家属邮寄调查问卷。对所有患者完成病历摘要，评估人口统计学特征和先前验证的姑息治疗指标。
在向家属发送的2016份调查问卷中，760份被退回，回复率为38%。家属退回调查问卷的患者更可能是白人（分别为88%和74%；p<0.001）；年龄更大（分别为71岁和69岁；p = 0.015）；并且接受了更多的姑息治疗指标，包括死亡时有家属在场的病历记录、精神护理的参与以及在决定限制维持生命治疗后死亡（p<0.05）。
对临终关怀调查做出回应的患者家属更可能是白人、年龄更大，并且病历中有姑息治疗指标记录。由于这些患者可能接受了更高质量的姑息治疗，这些发现表明临终关怀研究中的回应偏差倾向于高估姑息治疗的质量。
ClinicalTrials.gov标识符：NCT00685893。
