Differences in preferences for neonatal outcomes among health care professionals, parents, and adolescents

Context In neonatal intensive care, parents make important clinical managem ent decisions in conjunction with health care professionals. Yet little inf ormation is available on whether preferences of health care professionals a nd parents for the resulting health outcomes differ. Objective To measure and compare preferences for selected health states fro m the perspectives of health care professionals (ie, neonatologists and neo natal nurses), parents of extremely low-birth-weight (ELBW) or normal birth -weight infants, and adolescents who were either ELBW or normal birth-weigh t infants. Design Cross-sectional cohort study. Setting and Participants A total of 742 participants were recruited and int erviewed between 1993 and 1995, including 100 neonatologists from hospitals throughout Canada; 103 neonatal nurses from 3 regional neonatal intensive care units; 264 adolescents (aged 12-16 years), including 140 who were ELBW infants and 124 sociodemographically matched term controls; and 275 parent s of the recruited adolescents. Main Outcome Measure Preferences (utilities) for 4 to 5 hypothetical health states of children were obtained by direct interviews using the standard g amble method. Results Overall, neonatologists and nurses had similar preferences for the 5 health states, and a similar proportion rated some health states as worse than death (59% of neonatologists and 68% of nurses; P=.20). Health care p rofessionals rated the health states lower than did parents of ELBW and ter m infants (P<.001). Overall, 64% of health care professionals and 45% of pa rents rated 1 or more health states to be worse than death (P<.001), Differ ences in mean utility scores between health care professionals and parents and adolescent respondents were most pronounced for the 2 most severely dis abled health states (P<.001). Conclusions When asked to rate the health-related quality of life for the h ypothetical conditions of children, health care professionals tend to provi de lower utility scores than do adolescents and their parents. These findin gs have implications for decision making in the neonatal intensive care uni t.