Department of Child and Adolescent Health, The University of the West Indies, Mona, Kingston, Jamaica.
Caribbean Institute for Health Research-Sickle Cell Unit, The University of the West Indies, Mona, Kingston, Jamaica.
J Adolesc Health. 2023 Jan;72(1):12-20. doi: 10.1016/j.jadohealth.2022.07.013. Epub 2022 Oct 4.
The aim of this study is to assess the level of agreement between adolescents' self-assessment and parent-proxy reports on health-related quality of life (HRQOL) in Jamaican adolescents with chronic illness.
A cross-sectional study was conducted, recruiting adolescents living with a chronic illness (ALCIs)-asthma, human immunodeficiency virus, insulin-dependent diabetes mellitus, or sickle cell disease and age/sex-matched healthy adolescents. Data were collected on HRQOL from adolescents and parents using the Pediatric Quality of Life Scale. Parent-adolescent agreement was determined at group level (Wilcoxon signed-rank test) and individual level (intraclass correlation coefficient).
Two hundred twenty-six (226) parent/adolescent pairs participated: 130 ALCIs and 96 healthy peers; mean age 14.9 ± 2.8 years; 58% females. Adolescents with and without chronic illness reported similar HRQOL; parent-proxies reported better HRQOL for healthy adolescents compared to ALCIs. Intraclass correlation demonstrated higher levels of parent-adolescent correlation for ALCIs than healthy adolescents (ALCIs: 0.11-0.34; healthy adolescents: 0.01-0.10). At group level, analyses demonstrated better parent-proxy rating of QOL in all of the scores with the exception of the general health score. Parent-proxies overestimated QOL for asthma and insulin-dependent diabetes mellitus but not for sickle cell disease and human immunodeficiency virus. Linear regression modeling revealed that female sex and living with chronic illness were significant predictors of agreement.
Parent-proxies overestimated adolescents' QOL compared to adolescents' report regardless of whether the adolescent was living with a chronic illness or not. As such, health care providers should elicit feedback from the adolescent wherever possible and proxy reports should be used as complementary information rather than primary source.
本研究旨在评估牙买加慢性病青少年中，青少年自我评估与家长代理报告健康相关生活质量（HRQOL）的一致性水平。
进行了一项横断面研究，招募了患有哮喘、人类免疫缺陷病毒、胰岛素依赖型糖尿病或镰状细胞病的慢性病青少年（ALCIs）和年龄/性别匹配的健康青少年。使用儿科生活质量量表从青少年及其父母那里收集 HRQOL 数据。在群体水平（Wilcoxon 符号秩检验）和个体水平（组内相关系数）上确定了家长-青少年的一致性。
共纳入 226 对家长/青少年（130 例 ALCIs 和 96 例健康同龄人），平均年龄 14.9±2.8 岁，58%为女性。患有和不患有慢性病的青少年报告的 HRQOL 相似；与 ALCIs 相比，家长代理报告健康青少年的 HRQOL 更好。组内相关表明，ALCIs 的家长-青少年相关性高于健康青少年（ALCIs：0.11-0.34；健康青少年：0.01-0.10）。在群体水平上，除了一般健康评分外，分析显示所有评分的家长-代理对生活质量的评分都更好。家长代理对哮喘和胰岛素依赖型糖尿病的生活质量评分过高，但对镰状细胞病和人类免疫缺陷病毒则不然。线性回归模型显示，女性性别和患有慢性病是一致性的显著预测因素。
与青少年报告相比，无论青少年是否患有慢性病，家长代理都高估了青少年的 QOL。因此，医疗保健提供者应尽可能从青少年那里获得反馈，代理报告应作为补充信息而不是主要来源。
