Differences in Preferences for Neonatal Outcomes Among Health Care Professionals, Parents, and Adolescents | Adolescent Medicine | JAMA | JAMA Network
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1.
Stahlman MT. Ethical issues in the nursery: priorities versus limits.  J Pediatr.1990;116:167-170.Google Scholar
2.
Silverman WA. Overtreatment of neonates? a personal retrospective.  Pediatrics.1992;90:971-976.Google Scholar
3.
Harrison H. The principles for family-centered neonatal care.  Pediatrics.1993;92:643-650.Google Scholar
4.
Doyal L, Wilsher D. Towards guidelines for withholding and withdrawal of life prolonging treatment in neonatal medicine.  Arch Dis Child.1994;70:F66-F70.Google Scholar
5.
Lantos JD, Tyson JE, Allen A.  et al.  Withholding and withdrawing life sustaining treatment in neonatal intensive care: issues for the 1990s.  Arch Dis Child.1994;71:F218-F223.Google Scholar
6.
de Leeuw R, de Beaufort AJ, de Kleine MJK, van Harrewijn K, Kollée LAA. Foregoing intensive care treatment in newborn infants with extremely poor prognoses: a study in four neonatal intensive care units in the Netherlands.  J Pediatr.1996;129:661-666.Google Scholar
7.
Wall SN, Partridge JC. Death in the intensive care nursery: physician practice of withdrawing and withholding life support.  Pediatrics.1997;99:64-70.Google Scholar
8.
van der Heide A, van der Maas PJ, van der Wal G, Kollée LAA, de Leeuw R, Holl RA. The role of parents in end-of-life decisions in neonatology: physicians' views and practices.  Pediatrics.1998;101:413-418.Google Scholar
9.
Doron MW, Veness-Meehan KA, Margolis LH, Holoman EM, Stiles AD. Delivery room resuscitation decisions for extremely premature infants.  Pediatrics.1998;102:574-582.Google Scholar
10.
Fetus and Newborn Committee, Canadian Paediatric Society, Maternal-Fetal Medicine Committee, and Society of Obstetricians and Gynaecologists of Canada.  Management of the woman with threatened birth of an infant of extremely low gestational age.  CMAJ.1994;151:547-553.Google Scholar
11.
American Academy of Pediatrics, Committee on Fetus and Newborn, American College of Obstetricians and Gynecologists, and Committee on Obstetric Practice.  Perinatal care at the threshold of viability.  Pediatrics.1995;96:974-976.Google Scholar
12.
Torrance GW, Boyle MH, Horwood SP. Application of multi-attribute utility theory to measure social preferences for health states.  Operations Res.1982;30:1042-1069.Google Scholar
13.
Furlong W, Feeny D, Torrance GW, Barr R, Horsman J. Guide to Design and Development of Health-State Utility InstrumentationHamilton, Ontario: Centre for Health Economics and Policy Analysis, McMaster University; 1990. Working Paper Series 90-9.
14.
Torrance GW, Furlong W, Feeny D, Boyle M. Multi-attribute preference functions: Health Utilities Index.  PharmacoEconomics.1995;7:503-520.Google Scholar
15.
Saigal S, Furlong WJ, Feeny DH, Rosenbaum PL. Parents' perceptions of the health-related quality of life of teenage extremely low birthweight and control children [abstract].  Pediatr Res.1995;37(part 2):40a.Google Scholar
16.
Saigal S, Feeny D, Rosenbaum P, Furlong W, Burrows E, Stoskopf B. Self-perceived health status and health-related quality of life of extremely low-birth-weight infants at adolescence.  JAMA.1996;276:453-459.Google Scholar
17.
Saigal S, Szatmari P, Rosenbaum P, King S, Campbell D. Cognitive abilities and school performance of extremely low birth weight children and matched term control children at age 8 years: a regional study.  J Pediatr.1991;118:751-760.Google Scholar
18.
Torrance GW. Measurement of health state utilities for economic appraisal.  J Health Econ.1986;5:1-30.Google Scholar
19.
Saigal S, Rosenbaum P, Stoskopf B.  et al.  Comprehensive assessment of the health status of extremely low birth weight children at eight years of age: comparison with a reference group.  J Pediatr.1994;125:411-417.Google Scholar
20.
Saigal S, Feeny D, Furlong W, Rosenbaum P, Burrows E, Torrance G. Comparison of the health-related quality of life of extremely low birth weight children and a reference group of children at age eight years.  J Pediatr.1994;125:418-425.Google Scholar
21.
Feeny D, Furlong W, Barr RD, Torrance GW, Rosenbaum P, Weitzman S. A comprehensive multiattribute system for classifying the health status of survivors of childhood cancer.  J Clin Oncol.1992;10:923-928.Google Scholar
22.
Feeny DH, Torrance GW, Furlong WJ. Health utilities index. In: Spilker B, ed. Quality of Life and PharmacoEconomics in Clinical Trials. 2nd ed. Philadelphia, Pa: Lippincott-Raven Press; 1996:239-252.
23.
Patrick DL, Starks HE, Cain KC, Uhlmann RF, Pearlman RA. Measuring preferences for health states worse than death.  Med Decis Making.1994;14:9-18.Google Scholar
24.
Lee SK, Penner PL, Cox M. Comparison of the attitudes of health care professionals and parents toward active treatment of very low birth weight infants.  Pediatrics.1991;88:110-114.Google Scholar
25.
Schneiderman LJ, Kaplan RM, Pearlman RA, Teetzel H. Do physicians' own preferences for life-sustaining treatment influence their perceptions of patients' preferences?  J Clin Ethics.1993;4:28-33.Google Scholar
26.
Churchill DN, Torrance GW, Taylor DW.  et al.  Measurement of quality of life in end-stage renal disease: the time trade-off approach.  Clin Invest Med.1987;10:14-20.Google Scholar
27.
Saigal S, Rosenbaum P, Hoult L.  et al.  Conceptual and methodological issues in assessing health-related quality of life in children and adolescents: illustration from studies of extremely low birthweight survivors. In: Drotar D, ed.Measuring Health-Related Quality of Life in Children and Adolescents: Implications for Research and Practice. Mahwah, NJ: Lawrence Erlbaum Associates; 1998:151-169.
28.
Boyle MH, Torrance GW, Sinclair JC, Horwood SP. Economic evaluation of neonatal intensive care of very-low-birthweight infants.  N Engl J Med.1983;308:1330-1337.Google Scholar
29.
Cadman D, Goldsmith C, Bashim P. Values, preferences, and decisions in the care of children with developmental disabilities.  Dev Behav Pediatr.1984;5:60-64.Google Scholar
30.
Cadman D, Goldsmith C, Torrance G, Boyle M, Furlong W. Development of a Health Status Index for Ontario Children: Final Report to the Ontario Ministry of Health. Toronto: Ontario Ministry of Health; 1986. Research grant DM 648 (00633).
31.
Slevin ML, Stubbs L, Plant HJ.  et al.  Attitudes to chemotherapy: comparing views of patients with cancer with those of doctors, nurses, and general public.  BMJ.1990;300:1458-1460.Google Scholar
32.
Laine C, Davidoff F. Patient-centered medicine: a professional evolution.  JAMA.1996;275:152-156.Google Scholar
33.
Emanuel EJ, Emanuel LL. Four models of the doctor-patient relationship.  JAMA.1992;267:2221-2226.Google Scholar
34.
Tyson JE, Broyles RS. Progress in assessing the long-term outcome of extremely low-birth-weight infants [editorial].  JAMA.1996;276:492-493.Google Scholar
Original Contribution
June 2, 1999

Differences in Preferences for Neonatal Outcomes Among Health Care Professionals, Parents, and Adolescents

Author Affiliations

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.

JAMA. 1999;281(21):1991-1997. doi:10.1001/jama.281.21.1991
Abstract

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 recruited adolescents.

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 (P<.001).

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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