Health values in adolescents with or without inflammatory bowel disease.

OBJECTIVE: To examine for differences in and predictors of health value/utility scores in adolescents with or without inflammatory bowel disease (IBD). STUDY DESIGN: Adolescents with IBD and healthy control subjects were interviewed in an academic health center. We collected sociodemographic data and measured health status, personal, family, and social characteristics, and spiritual well-being. We assessed time tradeoff (TTO) and standard gamble (SG) utility scores for current health. We performed bivariate and multivariable analyses with utility scores used as outcomes. RESULTS: Sixty-seven patients with IBD and 88 healthy control subjects 11 to 19 years of age participated. Among subjects with IBD, mean (SD) TTO scores were 0.92 (0.17), and mean (SD) SG scores were 0.97 (0.07). Among healthy control subjects, mean (SD) TTO scores were 0.99 (0.03) and mean (SD) SG scores were 0.98 (0.03). TTO scores were significantly lower (P= .001), and SG scores trended lower (P= .065) in patients with IBD when compared with healthy control subjects. In multivariable analyses controlling for IBD status, poorer emotional functioning and spiritual well-being were associated with lower TTO (R(2)=0.17) and lower SG (R(2)=0.22) scores. CONCLUSION: Direct utility assessment in adolescents with or without IBD is feasible and may be used to assess outcomes. Adolescents with IBD value their health state highly, although less so than healthy control subjects. Emotional functioning and spiritual well-being appear to influence utility scores most strongly.

The impact of treatment of pulmonary exacerbations on the health-related quality of life of patients with cystic fibrosis: does hospitalization make a difference?

OBJECTIVES: To investigate the impact of pulmonary exacerbations on the health-related quality of life (HRQOL) of patients with cystic fibrosis (CF) and to elucidate factors that are associated with changes in HRQOL post-exacerbation. STUDY DESIGN: Participants completed questionnaires at a pre-exacerbation visit, at the beginning of the exacerbation, and at the post-exacerbation visit. To measure HRQOL, we used the Child Health Questionnaire-Parent Form (PF-50) and the Medical Outcomes Study Short Form-36 (SF-36). We examined demographic, clinical, and treatment-related predictor variables for association with change in Physical Summary (PhS) and Psychosocial Summary (PsS) HRQOL scores after an exacerbation. RESULTS: We collected data from 48 subjects. Patients experiencing exacerbations who were treated as outpatients had a mean (SD) age of 19.5 (12.7) years and a mean pre-exacerbation forced expiratory volume in 1 second (FEV(1)) of 70% (36%) of predicted; 53% were female. Patients treated as inpatients had a mean age of 14.6 (5.5) years and a mean FEV(1) of 56% (24%); 56% were female. In univariate analyses, exacerbations were associated with a statistically significant decrease in FEV(1) (-10.0%) and PhS scores (-4.5 points). PsS scores did not significantly change with exacerbations (-0.7 points). In multivariable analyses examining change between pre-exacerbation and post-exacerbation visits, no variables were significantly associated with change in PhS scores. However, not being hospitalized for the exacerbation was associated with deterioration in PsS scores, and being hospitalized was associated with improvement in PsS scores (beta coefficient: 9.4; P <.01) by the post-exacerbation visit. Results were similar from the exacerbation to the post-exacerbation visit. CONCLUSION: In patients with CF, on average, pulmonary exacerbations affect physical HRQOL more than psychosocial HRQOL. Being hospitalized for exacerbations is associated with improvement in psychosocial HRQOL after exacerbations, whereas not being hospitalized is associated with deterioration.

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 (FEV(1)) 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 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. 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.

Evaluation of heart murmurs in children: cost-effectiveness and practical implications.

OBJECTIVE: To assess the cost-effectiveness of various strategies to evaluate heart murmurs in children. METHODS: We modeled 6 strategies to follow the initial examination by the pediatrician: (1) refer suspected pathologic murmurs to a cardiologist, (2) obtain a chest radiograph (CXR) and electrocardiogram (ECG) and refer suspected pathologic murmurs to a cardiologist, (3) refer suspected pathologic murmurs for an echocardiogram (ECHO), (4) obtain a CXR and ECG and refer suspected pathologic murmurs for an ECHO, (5) refer all patients with murmurs to a cardiologist, or (6) refer all patients with murmurs for an ECHO. RESULTS: The least effective was strategy 1, which detects 82% of pathologic murmurs at $72 per patient evaluated. Strategy 5 detects 95% of pathologic murmurs at $38,000 per additional case detected over strategy 1. The most effective, strategy 6, detects 100% of pathologic murmurs at $158,000 per additional case detected over strategy 5. Strategies 2, 3, and 4 were not cost-effective. The results were sensitive to the costs of cardiology referral and ECHO. CONCLUSIONS: Adding a CXR and ECG to the pediatrician's evaluation, or selectively referring directly to ECHO increases costs with little gain in accuracy. Given the current cost constraints present in health care, whether the optimal strategy involves referring to a cardiologist or obtaining an ECHO for all patients with murmurs depends on how much society should allocate to diagnose pathologic murmurs.