Physicians' Perceptions of Shared Decision Making in Chronic Disease and Its Barriers and Facilitators.

This study assessed pediatric physicians' use of shared decision making (SDM) in 2 chronic conditions. Most physicians indicated that parent and adolescent trust and emotional readiness facilitated SDM, physicians' preferred approach to decision making. At the same time, they perceived few barriers, other than insurance limitations, to using SDM.

Real life clinic visits do not match the ideals of shared decision making.

OBJECTIVE: To use observation to understand how decisions about higher-risk treatments, such as biologics, are made in pediatric chronic conditions. METHODS: Gastroenterology and rheumatology providers who prescribe biologics were recruited. Families were recruited when they had an outpatient appointment in which treatment with biologics was likely to be discussed. Consent/assent was obtained to video the visit. Audio of the visits in which a discussion of biologics took place were transcribed and analyzed. Our coding structure was based on prior research, shared decision making (SDM) concepts, and the initial recorded visits. Coded data were analyzed using content analysis and comparison with an existing model of SDM. RESULTS: We recorded 21 visits that included discussions of biologics. In most visits, providers initiated the decision-making discussion. Detailed information was typically given about the provider's preferred option with less information about other options. There was minimal elicitation of preferences, treatment goals, or prior knowledge. Few parents or patients spontaneously stated their preferences or concerns. An implicit or explicit treatment recommendation was given in nearly all visits, although rarely requested. In approximately one-third of the visits, the treatment decision was never made explicit, yet steps were taken to implement the provider's preferred treatment. CONCLUSIONS: We observed limited use of SDM, despite previous research indicating that parents wish to collaborate in decision making. To better achieve SDM in chronic conditions, providers and families need to strive for bidirectional sharing of information and an explicit family role in decision making.

Parents' perceptions of a patient portal for managing their child's chronic illness.

Through interviews, we sought to describe parents' perceptions of a patient portal for the management of their child's chronic illness. Parents perceive patient portals as beneficial, providing easier communication with care providers, convenience, a sense of control, reduced anxiety, and reassurance. Future research should aim to quantitate these benefits.

Overestimation of impairment-related asthma control by adolescents.

We investigated the concordance between adolescents' perceived and impairment-related asthma control. Based on self-reported medication use, symptoms, and activity limitations, most overestimated their impairment-related control (73.8%). Providers should ask detailed, structured questions to get the most comprehensive picture of a patient's impairment-related control so they can ultimately improve disease outcomes.

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.

Decreasing overuse of therapies in the treatment of bronchiolitis by incorporating evidence at the point of care.

OBJECTIVE: To describe the effect of evidence-based point-of-care algorithms and rules, based on guideline recommendations, on the overuse of therapies for bronchiolitis. Study design Pre-postintervention for infants <1 year of age admitted with a first-time episode of bronchiolitis. Data collected for guideline-eligible patients discharged between January 15, 2002, and March 27, 2002, were compared with data collected for guideline-eligible patients discharged from the hospital with a diagnosis of bronchiolitis during the same time period in the first 5 years after the original guideline implementation (1997 to 2001). The primary outcome of interest was use of bronchodilator therapy. Secondary outcomes included use of guideline order sets, resource utilization, length of stay, and readmission. RESULTS: A total of 256 patients from 2002 were compared with 1272 historic patients. In 2002, the odds of receiving any bronchodilator, more than 1, more than 2, and more than 4 bronchodilators were all significantly less than predicted by the 1997 to 2001 year-to-year trend. The odds of receiving a nasopharyngeal wash for respiratory syncytial virus and a chest radiography (OR=0.680, CL=0.476, 0.973) were also significantly lower than what was predicted from use trends of previous years. CONCLUSIONS: Evidence-based point-of-care instruments can have a significant effect on unwarranted treatment variation.

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.

Importance of organ dysfunction in determining hospital outcomes in children.

OBJECTIVES: To use measures of organ dysfunction derived from administrative data to assess clinical and economic outcomes in hospitalized children. STUDY DESIGN: We used the International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM) diagnostic and procedure codes to evaluate organ dysfunction in all patients, excluding neonates, in the Healthcare Cost and Utilization Project Kids' Inpatient Database (KID). We adapted consensus clinical definitions to characterize organ dysfunction in terms of degree of impairment, type of organ system involvement, and number of dysfunctional organ systems. Univariate and multivariable models were constructed to determine the impact of organ dysfunction on in-hospital mortality and resource use. RESULTS: Patients with organ dysfunction (n=51,386) were younger and more often male than those without organ dysfunction, and they had significantly higher in-hospital mortality and resource use. Organ dysfunction, assessed in terms of degree, type, and number of dysfunctional organ systems, was consistently associated with all hospital outcomes. In multivariable models, types of organ system failures were most predictive of in-hospital mortality, whereas degree of organ system involvement allowed for a better assessment of resource use. CONCLUSIONS: Administrative data can be used to characterize multiple dimensions of organ dysfunction in children. Hospitalizations involving organ dysfunction are associated with significant clinical and economic consequences.

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.