Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
J Palliat Med. 2022 Mar;25(3):455-460. doi: 10.1089/jpm.2021.0433. Epub 2022 Jan 4.
Our previous study to understand end-of-life care of adolescents and young adults (AYAs) had a suboptimal survey response rate by bereaved caregivers. To identify sociodemographic factors associated with caregiver nonparticipation. analysis of a retrospective multicenter cohort study of caregivers of deceased AYAs from 2013 to 2016. Exposures: race, ethnicity, area-, and household-poverty. Primary outcome: survey participation. Secondary outcomes: loss to follow-up at each recruitment step. Thirty-five of 263 eligible caregivers participated in the survey (13.3%). Caregivers of AYAs living in high-poverty zip codes were significantly more likely to have a disconnected or incorrect phone number (odds ratio [OR] 2.12; 95% confidence interval [CI] 1.04-4.58; = 0.03). Caregivers of nonwhite AYAs were significantly less likely to participate (OR 0.35; 95% CI 0.12-0.87; = 0.01). Caregivers of patients living in poverty are less likely to be reached by traditional recruitment efforts. Caregivers of racial/ethnic minority patients are less likely to participate overall.
我们之前的研究旨在了解青少年和年轻成年人（AYAs）的临终关怀，但通过失去亲人的护理人员进行调查的响应率不理想。为了确定与护理人员不参与相关的社会人口因素。对 2013 年至 2016 年期间死亡的 AYA 护理人员进行回顾性多中心队列研究的分析。暴露因素：种族、族裔、地区和家庭贫困。主要结局：调查参与。次要结局：在每个招募步骤中的随访丢失。在 263 名符合条件的护理人员中，有 35 名（13.3%）参与了调查。居住在高贫困邮政编码区的 AYA 护理人员的电话号码更有可能已断开连接或不正确（优势比 [OR] 2.12；95%置信区间 [CI] 1.04-4.58； = 0.03）。非白人 AYA 的护理人员参与的可能性明显较低（OR 0.35；95% CI 0.12-0.87； = 0.01）。生活贫困的患者的护理人员不太可能通过传统的招募工作联系到。总体而言，少数族裔患者的护理人员参与的可能性较低。
