Division of Pediatric Nephrology, Kaohsiung Chang Gung Memorial Hospital, Kaohsiung, 833, Taiwan.
College of Medicine, Chang Gung University, Taoyuan, 333, Taiwan.
Pediatr Nephrol. 2023 Feb;38(2):519-528. doi: 10.1007/s00467-022-05621-2. Epub 2022 Jun 9.
Correlation between reports of children and parent for health-related quality of life (HRQOL) is not well studied. This study aims to assess the degree of agreement between child self- and parent proxy-rated HRQOL and to identify factors associated with discordance at baseline and during follow-up in Taiwanese children with chronic kidney disease (CKD).
This study includes pediatric patients aged 5-18 years with confirmed CKD. Participants completed the generic version of the Pediatric Quality of Life Inventory (PedsQL) at baseline and every 6 months during follow-up. Child-parent agreement on HRQOL reports was assessed using intraclass correlation coefficient (ICC). Multivariate regression models were used to determine factors associated with child-parent discordance.
Of the 112 child-parent dyads included in the analysis, 97 dyads with 640 patient visits were assessed in 4.5 years. Children reported higher total scores on the physical and psychosocial domains as compared to their parent proxies. ICC was low (< 0.5) for the psychosocial domain and moderate for the physical health domain at initial assessment and slightly increased for the physical health (0.62) and for school functioning (0.51) during follow-up. Development of mineral bone disorder/anemia (β, 11.75 [3.77-19.72]) and proteinuria (β, 8.48 [1.15-15.81]) in the follow-up were associated with increased discordance in school functioning, and fathers with chronic disease were associated with increased discordance in social functioning (β, 4.21 [0.68-7.74]).
Parent proxy consistently estimated lower PedsQL score compared to self-reports of children. Child self-rated psychosocial health domains should be evaluated whenever possible to better elucidate treatment outcome over time. A higher resolution version of the Graphical abstract is available as Supplementary information.
儿童与父母报告的健康相关生活质量（HRQOL）之间的相关性尚未得到充分研究。本研究旨在评估台湾儿童慢性肾脏病（CKD）患者中，儿童自我报告和父母代理报告的 HRQOL 之间的一致性程度，并确定基线和随访期间不一致的相关因素。
本研究纳入了年龄在 5-18 岁、确诊为 CKD 的儿科患者。参与者在基线和随访期间每 6 个月完成儿童生活质量量表（PedsQL）通用版。采用组内相关系数（ICC）评估 HRQOL 报告的儿童-父母一致性。采用多变量回归模型确定与儿童-父母不一致相关的因素。
在纳入分析的 112 对儿童-父母对子中，有 97 对在 4.5 年内共评估了 640 次就诊。与父母代理人报告相比，儿童报告在生理和心理社会领域的总分更高。在初始评估时，心理社会领域的 ICC 较低（<0.5），生理健康领域的 ICC 为中度（0.62），在随访期间，生理健康（0.62）和学校功能（0.51）的 ICC 略有增加。随访期间发生矿物质骨代谢紊乱/贫血（β，11.75 [3.77-19.72]）和蛋白尿（β，8.48 [1.15-15.81]）与学校功能的差异增加相关，而患有慢性疾病的父亲与社会功能的差异增加相关（β，4.21 [0.68-7.74]）。
与儿童自我报告相比，父母代理报告的 PedsQL 评分始终较低。应尽可能评估儿童自我报告的心理社会健康领域，以更好地阐明随时间推移的治疗效果。可在补充信息中查看图形抽象的更高分辨率版本。
