Parent Preferences Regarding Home Oxygen Use for Infants with Bronchopulmonary Dysplasia.

OBJECTIVES: To determine parent preferences for discharge with home oxygen in infants with bronchopulmonary dysplasia. STUDY DESIGN: This was a prospective study of parents of infants born at <32 weeks' gestation with established bronchopulmonary dysplasia and approaching neonatal intensive care unit (NICU) discharge. Parents were presented a hypothetical scenario of an infant who failed weaning to room air and 2 options: discharge with home oxygen or try longer to wean oxygen. The initial scenario risks reflected a 1.5-week difference in NICU length of stay and no differences in other outcomes. Length of stay and readmission outcomes were increased or decreased until the parent switched preference. Three months after discharge, parents were asked to reconsider their preference. Differences were analyzed by χ2 or Kruskal-Wallis tests. RESULTS: Of 125 parents, 50% preferred home oxygen. For parents preferring home oxygen, the most important reason was comfort at home (79%). Forty percent switched preference when the length of stay difference decreased by 1 week; 35% switched when readmission increased by 5%. For parents preferring to stay in NICU, the most important reason was fear of taking care of the child at home (73%). Thirty-two percent switched preference when the length of stay difference increased by 1 week; 31% switched when readmission decreased by 5%. One hundred ten parents completed the 3-month follow-up; 80 were discharged with home oxygen. Seventy-eight percent would prefer home oxygen (97% who initially preferred home oxygen and 60% who initially preferred to stay in the NICU). CONCLUSIONS: Parents weigh differences in NICU length of stay and readmission risk similarly. After discharge, most prefer earlier discharge with home oxygen. Earlier education to increase comfort with home technology may facilitate NICU discharge planning.

Reliability, Validity, and Feasibility of Direct Elicitation of Children's Preferences for Health States.

BACKGROUND: Children's preferences for health states represent an important perspective when comparing the value of alternative health care interventions related to pediatric medicine, and are fundamental to comparative effectiveness research. However, there is debate over whether these preference data can be collected and used. PURPOSE: The purpose of this study was to establish psychometric properties of eliciting preferences for health states from children using direct methods. DATA SOURCES: Ovid Medline, PsycINFO, Scopus, EconLit. STUDY SELECTION: English studies, published after 1990, were identified using Medical Subject Headings or keywords. Results were reviewed to confirm that the study was based on: 1) a sample of children, and 2) preferences for health states. DATA EXTRACTION: Standardized data collection forms were used to record the preference elicitation method used, and any reported evidence regarding the validity, reliability, or feasibility of the method. DATA SYNTHESIS: Twenty-six studies were ultimately included in the analysis. The standard gamble and time tradeoff were the most commonly reported direct preference elicitation methods. Seven studies reported validity, four reported reliability, and nine reported feasibility. Of the validity reports, construct validity was assessed most often. Reliability reports typically involved interclass correlation coefficient. For feasibility, four studies reported completion rates. LIMITATIONS: The search was limited to four databases and restricted to English studies published after 1990. Only evidence available in published studies were considered; measurement properties may have been tested in pilot or pre-studies but were not published, and are not included in this review. CONCLUSION: The few studies found through this systematic review demonstrate that there is little empirical evidence on which to judge the use of direct preference elicitation methods with children regarding health states.