Sung L, Young N L, Greenberg M L, McLimont M, Samanta T, Wong J, Rubenstein J, Ingber S, Doyle J J, Feldman B M
Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada.
J Clin Epidemiol. 2004 Nov;57(11):1161-6. doi: 10.1016/j.jclinepi.2004.05.003.
To describe the relationship between health-related quality of life (HRQL) as measured by utility when elicited from parents and their children with chronic illness.
We enrolled families of children admitted for cancer chemotherapy and those attending outpatient rheumatology, hemophilia and bone marrow transplantation clinics. Children in grade 6 or higher were included. The child's HRQL was rated by parent and child using the Standard Gamble (SG), Visual Analogue Scale (VAS), Time Trade-Off (TTO), and Health Utilities Index Mark 2/3 (HUI2 and HUI3).
22 families were included. The mean parent SG was 0.92 +/- 0.09, which was similar to the mean SG elicited from their children of 0.92 +/- 0.10. The parent and child SG were moderately concordant (ICC=0.64, 95% CI=0.30, 0.83; P=.0005). In contrast, TTO scores were not concordant (ICC=0.14, 95% CI=-0.29, 0.53; P=.3), with parents (mean TTO=0.77 +/- 0.31) rating HRQL worse than children (mean TTO=0.92 +/- 0.11; P=.04). Similarly, the mean parent HUI2 of 0.82 +/- 0.22 was lower than the child HUI2 of 0.95 +/- 0.07; P=.02 and HUI2 were not concordant (ICC=0.11, 95% CI=-0.35, 0.53; P=.3) between parents and children.
Parents and children rate HRQL similarly according to SG, but parents rate HRQL significantly worse using TTO and HUI2.
描述从患有慢性病的父母及其子女那里获取的效用所衡量的健康相关生活质量（HRQL）之间的关系。
我们招募了因癌症化疗入院的儿童家庭以及那些前往门诊风湿病科、血友病科和骨髓移植诊所就诊的家庭。纳入六年级及以上的儿童。使用标准博弈法（SG）、视觉模拟量表（VAS）、时间权衡法（TTO）以及健康效用指数2/3版（HUI2和HUI3），由父母和孩子对儿童的HRQL进行评分。
纳入22个家庭。父母的平均SG评分为0.92±0.09，与其子女的平均SG评分0.92±0.10相似。父母和子女的SG评分具有中度一致性（组内相关系数ICC = 0.64，95%可信区间CI = 0.30，0.83；P = 0.0005）。相比之下，TTO评分不一致（ICC = 0.14，95%可信区间CI = -0.29，0.53；P = 0.3），父母（平均TTO = 0.77±0.31）对HRQL的评分比孩子（平均TTO = 0.92±0.11；P = 0.04）低。同样，父母的平均HUI2评分为0.82±0.22，低于孩子的HUI2评分0.95±0.07；P = 0.02，且父母与孩子之间HUI2评分不一致（ICC = 0.11，95%可信区间CI = -0.35，0.53；P = 0.3）。
根据SG，父母和孩子对HRQL的评分相似，但父母使用TTO和HUI2对HRQL的评分明显更低。
