Health values of adolescents with cystic fibrosis

Objectives To assess health values (utilities) in adolescents with cystic fibrosis (CF) and to evaluate how health status, and clinical factors affect their health values. Methods 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 (FEV1) and frequency of pulmonary exacerbations. Results The mean age (+/- SD) of the 65 adolescents was 15.1 (+/- 2.1) years; 53.8% were male; their mean FEV1 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. Conclusions 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.