Department of Population and Public Health Sciences, University of Southern California, Los Angeles, CA, USA.
Department of Radiation Medicine and Applied Sciences, University of California San Diego, San Diego, CA, USA.
Eval Health Prof. 2024 Sep;47(3):328-335. doi: 10.1177/01632787231185856. Epub 2023 Jun 28.
Pediatric Health Related Quality of Life (HRQoL) among childhood cancer survivors (CCS) measures the impact of illness and treatment from the patient's perspective. However, parents often serve as proxies when the child cannot provide information directly. Studies of agreement between parents' proxy assessment and child's self-report have shown discrepancies. Understanding the reasons for discrepancies is under studied. Thus, this study examined the agreement of 160 parent-CCS dyads on the child's domains of HRQoL by mean difference, intra-class correlation coefficients, and Bland-Altman plots. Differences in agreement were assessed by patients' age, ethnicity, and whether or not they lived with their parents. Overall, the Physical Function Score showed good agreement between parents and CCS (ICC = 0.62), while the Social Function Score had fair agreement (ICC = 0.39). CCS were more likely to rate their Social Function Score higher than their parent. The lowest agreement for the Social Function Score was found for 18-20 years old's (ICC = .254) versus younger or older CCS, and among non-Hispanic whites (ICC = 0.301) versus Hispanics. Differences in agreement varied by patient age and ethnicity, suggesting that other factors, including emotional, familial, and cultural factors, may influence parental awareness of CCS HRQoL.
儿科健康相关生活质量(HRQoL)是从患者角度衡量儿童癌症幸存者(CCS)疾病和治疗影响的指标。然而,当孩子无法直接提供信息时,父母通常会作为代理人。研究表明,父母代理评估和孩子自我报告之间存在差异。对于差异的原因的理解还不够深入。因此,本研究通过平均差异、组内相关系数和 Bland-Altman 图,检查了 160 对父母-CCS 对子对儿童 HRQoL 领域的一致性。通过患者年龄、种族以及是否与父母同住来评估一致性的差异。总体而言,父母与 CCS 的身体功能评分具有较好的一致性(ICC=0.62),而社会功能评分的一致性则为一般(ICC=0.39)。CCS 更有可能比父母对他们的社会功能评分评价更高。对于 18-20 岁的患者(ICC=0.254),社会功能评分的一致性最低,低于或高于该年龄段的 CCS,以及非西班牙裔白人(ICC=0.301)与西班牙裔患者相比。一致性的差异因患者年龄和种族而异,这表明其他因素,包括情感、家庭和文化因素,可能会影响父母对 CCS HRQoL 的认识。