Department of Medicine, University of Washington, Seattle.
Department of Epidemiology, University of Washington, Seattle.
JAMA Netw Open. 2023 Apr 3;6(4):e239949. doi: 10.1001/jamanetworkopen.2023.9949.
Family members of patients with severe acute brain injury (SABI) are at risk for poor psychological outcomes.
To explore the utility of the early use of a palliative care needs checklist in identifying care needs of patients with SABI and family members who are at risk of poor psychological outcomes.
DESIGN, SETTING, AND PARTICIPANTS: This prospective cohort study included patients with SABI in an intensive care unit (ICU) for 2 days or more and a Glasgow Coma Scale score of 12 or lower and their family members. This single-center study was conducted at an academic hospital in Seattle, Washington, from January 2018 to June 2021. Data were analyzed from July 2021 to July 2022.
At enrollment, a 4-item palliative care needs checklist was completed separately by clinicians and family members.
A single family member for each enrolled patient completed questionnaires assessing symptoms of depression and anxiety, perception of goal-concordant care, and satisfaction in the ICU. Six months later, family members assessed their psychological symptoms, decisional regret, patient functional outcome, and patient quality of life (QOL).
A total of 209 patient-family member pairs (family member mean [SD] age, 51 [16] years; 133 women [64%]; 18 Asian [9%], 21 Black [10%], 20 [10%] Hispanic, and 153 White [73%] participants) were included. Patients had experienced stroke (126 [60%]), traumatic brain injury (62 [30%]), and hypoxic-ischemic encephalopathy (21 [10%]). At least 1 need was identified for 185 patients or their families (88%) by family members and 110 (53%) by clinicians (κ = -0.007; 52% agreement). Symptoms of at least moderate anxiety or depression were present in 50% of family members at enrollment (87 with anxiety and 94 with depression) and 20% at follow-up (33 with anxiety and 29 with depression). After adjustment for patient age, diagnosis, and disease severity and family race and ethnicity, clinician identification of any need was associated with greater goal discordance (203 participants; relative risk = 1.7 [95% CI, 1.2 to 2.5]) and family decisional regret (144 participants; difference in means, 17 [95% CI, 5 to 29] points). Family member identification of any need was associated with greater symptoms of depression at follow-up (150 participants; difference in means of Patient Health Questionnaire-2, 0.8 [95% CI, 0.2 to 1.3] points) and worse perceived patient QOL (78 participants; difference in means, -17.1 [95% CI, -33.6 to -0.5] points).
In this prospective cohort study of patients with SABI and their families, palliative care needs were common, although agreement on needs was poor between clinicians and family members. A palliative care needs checklist completed by clinicians and family members may improve communication and promote timely, targeted management of needs.
严重急性脑损伤（SABI）患者的家属存在心理结局不良的风险。
探讨早期使用姑息治疗需求清单来识别 SABI 患者及其有心理结局不良风险的家属的护理需求的作用。
设计、地点和参与者：这项前瞻性队列研究纳入了在重症监护病房（ICU）中至少住院 2 天且格拉斯哥昏迷量表评分 12 分或更低的 SABI 患者及其家属。这项单中心研究于 2018 年 1 月至 2021 年 6 月在华盛顿州西雅图的一家学术医院进行。数据于 2021 年 7 月至 2022 年 7 月进行分析。
在入组时，临床医生和家属分别完成了一份 4 项姑息治疗需求清单。
每位入组患者的一名家属完成了评估抑郁和焦虑症状、感知目标一致的护理、以及 ICU 满意度的问卷。6 个月后，家属评估了他们的心理症状、决策后悔、患者的功能结局和患者的生活质量（QOL）。
共纳入了 209 对患者-家属（家属平均[SD]年龄为 51[16]岁；133 名女性[64%]；18 名亚洲人[9%]，21 名黑人[10%]，20 名[10%]西班牙裔和 153 名白人[73%]参与者）。患者经历过中风（126[60%]）、创伤性脑损伤（62[30%]）和缺氧缺血性脑病（21[10%]）。至少有 1 种需求是由家属（185 名患者或其家属中的 88%）和 110 名（53%）临床医生识别出的（κ= -0.007；52%的一致性）。在入组时，50%的家属有至少中度的焦虑或抑郁症状（87 名有焦虑，94 名有抑郁），20%在随访时（33 名有焦虑，29 名有抑郁）。在调整了患者年龄、诊断、疾病严重程度以及家庭种族和民族因素后，临床医生识别出的任何需求都与更大的目标不一致（203 名参与者；相对风险=1.7[95%CI，1.2 至 2.5]）和家庭决策后悔（144 名参与者；平均差异，17[95%CI，5 至 29]分）相关。家属识别出任何需求都与随访时更大的抑郁症状相关（150 名参与者；患者健康问卷-2 的平均差异，0.8[95%CI，0.2 至 1.3]分）和更差的感知患者 QOL（78 名参与者；平均差异，-17.1[95%CI，-33.6 至 -0.5]分）相关。
在这项对 SABI 患者及其家属的前瞻性队列研究中，姑息治疗需求很常见，尽管临床医生和家属对需求的共识很差。由临床医生和家属完成的姑息治疗需求清单可能会改善沟通，并促进及时、有针对性地管理需求。
