Department of Pediatrics, University of Nebraska, Omaha.
National Center for Ethics in Healthcare, Washington, DC.
JAMA Netw Open. 2022 Mar 1;5(3):e221855. doi: 10.1001/jamanetworkopen.2022.1855.
The variability in individual symptom and adverse event reporting between pediatric patient-reports and proxy-reports is widely reported. However, the question of whether symptom profiles based on reports from children with cancer and their caregivers are similar or disparate have not yet been studied.
To compare proxy symptom reports with patient self-reports to assess alignment.
DESIGN, SETTING, AND PARTICIPANTS: A multicenter cohort study was conducted from October 2016 to December 2018 from data collected at 9 pediatric cancer centers. Participants were a convenience sample of family caregivers or proxies of children aged 7 to 18 years who had received disease-directed oncology treatment in the form of chemotherapy for at least 1 month. Data were analyzed identifying clusters of individuals (ie, latent profiles) based on various responses (ie, indicators) in August 2021.
The children of proxy participants received upfront chemotherapy. Children and proxies completed Patient-Reported Outcomes Measurement Information System (PROMIS) surveys at 2 time points: within 72 hours preceding treatment initiation and following the course of chemotherapy.
The latent profile analysis methods were applied to caregiver-proxy reports of PROMIS Pediatric symptom and function measures (anxiety, depressive symptoms, pain interference, fatigue, psychological stress, and physical function-mobility). The instrument categorized respondents as high symptom suffering, medium symptom suffering, and low symptom suffering (hereafter, high, medium, and low symptom groups, respectively).
Of 580 approached proxies, 431 (368 [85.00%] were female) identified as legal guardians of children aged 7 to 18 years with a first cancer diagnosis (mean [SD] age, 13.03 [3.40] years; 235 [54.65%] were male). Proxy reports of children's experiences based on the 5 proxy PROMIS measures comprised 3 distinct symptom profiles. The most common proxy assessments of children's experiences were the moderate symptom groups (45.7% [197 of 431]) and the low symptom groups profiles (40.1% [173 of 431]). A high symptom groups profile emerged which represented 14.2% (61 of 431) of proxy assessments. The number of profiles and observed distribution of profile membership was similar between child and proxy reports. Proxy reports of individual symptoms generally recorded higher scores than child reports; however, no significant difference was observed between proxies and child profile model results for the PROMIS measures.
Results of this cohort study suggest that, at the level of symptom severity profile, proxy caregiver reports may approximate the children's reports and may serve as a guide to care when the child is not able to self-report.
儿科患者报告和代理报告之间的个体症状和不良事件报告的变异性已被广泛报道。然而，基于癌症患儿及其照顾者报告的症状特征是否相似或不同的问题尚未得到研究。
比较代理症状报告与患者自我报告，以评估一致性。
设计、地点和参与者：这项多中心队列研究于 2016 年 10 月至 2018 年 12 月进行，数据来自 9 个儿科癌症中心收集的数据。参与者为便利样本，包括年龄在 7 至 18 岁之间的儿童的照顾者或代理人，这些儿童已接受至少 1 个月的化疗形式的疾病导向肿瘤治疗。2021 年 8 月，基于各种反应（即指标），对数据进行了识别个体（即潜在特征）集群的分析。
代理参与者的孩子接受了前期化疗。儿童和代理人在治疗开始前 72 小时内和化疗结束后完成了患者报告的结局测量信息系统（PROMIS）调查。
应用潜在剖面分析方法对照顾者-代理人报告的 PROMIS 儿科症状和功能测量（焦虑、抑郁症状、疼痛干扰、疲劳、心理压力和身体功能-移动性）进行了分析。该工具将受访者分为高症状组、中症状组和低症状组（以下分别简称高、中、低症状组）。
在 580 名被接触的代理人中，有 431 名（368 名[85.00%]为女性）被确定为 7 至 18 岁首次癌症诊断儿童的合法监护人（平均[标准差]年龄，13.03[3.40]岁；235 名[54.65%]为男性）。基于 5 项代理 PROMIS 措施，代理对儿童经历的报告包含 3 种不同的症状特征。最常见的代理评估是儿童经历中度症状组（45.7%[197 名/431 名]）和低症状组（40.1%[173 名/431 名]）。出现了一个高症状组特征，占代理评估的 14.2%（61 名/431 名）。儿童和代理报告的特征数量和观察到的特征分布相似。代理对个体症状的报告通常记录的分数高于儿童报告；然而，在 PROMIS 测量中，代理和儿童的特征模型结果之间没有观察到显著差异。
这项队列研究的结果表明，在症状严重程度特征层面，代理照顾者的报告可能接近儿童的报告，并可在儿童无法自我报告时作为护理指南。
