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Saigal S, Stoskopf BL, Feeny D, et al. Differences in Preferences for Neonatal Outcomes Among Health Care Professionals, Parents, and Adolescents. JAMA. 1999;281(21):1991–1997. doi:10.1001/jama.281.21.1991
Author Affiliations: Departments of Pediatrics (Drs Saigal and Rosenbaum and Mss Stoskopf, Burrows, and Hoult) and Clinical Epidemiology and Biostatistics and the Centre for Health Economics and Policy Analysis (Dr Feeny and Mr Furlong), McMaster University and Children's Hospital at Hamilton Health Sciences Corporation, Hamilton, Ontario (Drs Saigal and Rosenbaum and Mss Stoskopf, Burrows, and Hoult). Dr Feeny is now with the University of Alberta and the Institute of Pharmaco-Economics, Edmonton, Alberta, and he and Mr Furlong are also with Health Utilities Inc, Dundas, Ontario. Ms Burrows is now with Monash University, Melbourne, Australia.
Context In neonatal intensive care, parents make important
clinical management decisions in conjunction with health care
professionals. Yet little information is available on whether
preferences of health care professionals and parents for the resulting
health outcomes differ.
Objective To measure and compare preferences for selected health
states from the perspectives of health care professionals (ie,
neonatologists and neonatal nurses), parents of extremely
low-birth-weight (ELBW) or normal birth-weight infants, and adolescents
who were either ELBW or normal birth-weight infants.
Design Cross-sectional cohort study.
Setting and Participants A total of 742 participants were
recruited and interviewed 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 parents of the
Main Outcome Measure Preferences (utilities) for 4 to 5
hypothetical health states of children were obtained by direct
interviews using the standard gamble 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 professionals
rated the health states lower than did parents of ELBW and term infants
(P<.001). Overall, 64% of health care professionals and
45% of parents rated 1 or more health states to be worse than death
(P<.001). Differences in mean utility scores between health
care professionals and parents and adolescent respondents were most
pronounced for the 2 most severely disabled health states
Conclusions When asked to rate the health-related quality of life
for the hypothetical conditions of children, health care professionals
tend to provide lower utility scores than do adolescents and their
parents. These findings have implications for decision making in the
neonatal intensive care unit.
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