Yi Michael S, Britto Maria T, Wilmott Robert W, Kotagal Uma R, Eckman Mark H, Nielson Dennis W, Kociela Vikki L, Tsevat Joel
Department of Internal Medicine, University of Cincinnati Medical Center, Cincinnati Children's Hospital, Cincinnati; Ohio 45267-0535, USA.
J Pediatr. 2003 Feb;142(2):133-40. doi: 10.1067/mpd.2003.51.
To assess health values (utilities) in adolescents with cystic fibrosis (CF) and to evaluate how health status and clinical factors affect their health values.
Adolescents 12 to 18 years of age completed the Child Health Questionnaire (CHQ), Health Utilities Index Mark 2 (HUI2), and 3 health value measures: the visual analog scale (VAS), time tradeoff (TTO), and standard gamble (SG). Severity of illness was measured by percent of predicted forced expiratory volume in 1 second (FEV(1)) and frequency of pulmonary exacerbations.
The mean age (+/- SD) of the 65 adolescents was 15.1 (+/- 2.1) years; 53.8% were male; their mean FEV(1) was 72.8% (+/- 27.0%) predicted. The mean TTO utility was 0.96 (+/- 0.07) and the mean SG utility was 0.92 (+/- 0.15). In multivariable analysis, the General Health Perceptions domain from the CHQ was the only health status scale significantly associated with the VAS, TTO, and SG. No clinical or demographic measures were significantly related to both TTO and SG scores.
Direct utility assessment in adolescents with CF is feasible. Their TTO and SG utilities are generally high, indicating that they are willing to trade very little of their life expectancy or take more than a small risk of death to obtain perfect health. Their self-rated health perceptions are related to their health values, but, as in adult populations, only moderately so, indicating that health values are highly individualistic. Therefore, health values should be ascertained directly from adolescents.
评估囊性纤维化（CF）青少年的健康价值（效用），并评估健康状况和临床因素如何影响他们的健康价值。
12至18岁的青少年完成了儿童健康问卷（CHQ）、健康效用指数Mark 2（HUI2）以及3种健康价值测量方法：视觉模拟量表（VAS）、时间权衡法（TTO）和标准博弈法（SG）。通过1秒用力呼气量（FEV₁）预测值的百分比和肺部加重发作的频率来衡量疾病的严重程度。
65名青少年的平均年龄（±标准差）为15.1（±2.1）岁；53.8%为男性；他们的平均FEV₁为预测值的72.8%（±27.0%）。平均TTO效用为0.96（±0.07），平均SG效用为0.92（±0.15）。在多变量分析中，CHQ中的总体健康感知领域是唯一与VAS、TTO和SG显著相关的健康状况量表。没有临床或人口统计学指标与TTO和SG分数均显著相关。
对CF青少年进行直接效用评估是可行的。他们的TTO和SG效用普遍较高，表明他们愿意以极少的预期寿命作为交换，或承担极小的死亡风险来获得完美健康。他们的自评健康感知与健康价值相关，但与成人人群一样，只是中等程度相关，这表明健康价值具有高度个体化。因此，应直接从青少年中确定健康价值。
