You are seeing this message because your Web browser does not support basic Web standards. Find out more about why this message is appearing and what you can do to make your experience on this site better.


ABOUT JAMA
Advanced Search

Welcome   | My Account | E-mail Alerts | Access Rights | Sign In


  Vol. 281 No. 21, June 2, 1999 TABLE OF CONTENTS
  JAMA
  •  Online Features
  Original Contribution
 This Article
 •Full text
 •PDF
 •Send to a friend
 • Save in My Folder
 •Save to citation manager
 •Permissions
 Citing Articles
 •Citation map
 •Citing articles on HighWire
 •Citing articles on ISI (90)
 •Contact me when this article is cited
 Related Content
 •Related letter
 •Related articles
 •Similar articles in JAMA
 Topic Collections
 •Pediatric/ Neonatal Critical Care
 •Pediatrics
 •Adolescent Medicine
 •Neonatology and Infant Care
 •Quality of Life
 •Alert me on articles by topic

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

Saroj Saigal, MD, FRCP; Barbara L. Stoskopf, RN, MHSc; David Feeny, PhD; William Furlong, MSc; Elizabeth Burrows, MBA; Peter L. Rosenbaum, MD, FRCP; Lorraine Hoult, BA

JAMA. 1999;281:1991-1997.

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.


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.


RELATED LETTER

Informed Decisions for Extremely Low-Birth-Weight Infants
Gloria Culver, Kristina Fallon, Ronnie B. Londner, Nancy Montalvo, Brian Vila, Brenda James Ramsey, Carl Scott Ramsey, Gaelle Trebaol, Louis Houle, Andrea Williams, Hugh Williams, Teresa Wolding, Saroj Saigal, Barbara L. Stoskopf, David Feeny, William Furlong, Elizabeth Burrows, Peter L. Rosenbaum, and Lorraine Hoult
JAMA. 2000;283(24):3201-3202.
EXTRACT | FULL TEXT  

RELATED ARTICLES

Decisions Regarding Treatment of Seriously Ill Newborns
Norman Fost
JAMA. 1999;281(21):2041-2043.
EXTRACT | FULL TEXT  

June 2, 1999
JAMA. 1999;281(21):2057-2058.
EXTRACT | FULL TEXT  


THIS ARTICLE HAS BEEN CITED BY OTHER ARTICLES

Health-Related Quality of Life for Extremely Low Birth Weight Adolescents in Canada, Germany, and the Netherlands
Verrips et al.
Pediatrics 2008;122:556-561.
ABSTRACT | FULL TEXT  

Values Parents Apply to Decision-Making Regarding Delivery Room Resuscitation for High-Risk Newborns
Boss et al.
Pediatrics 2008;122:583-589.
ABSTRACT | FULL TEXT  

Decisions for life made in the perinatal period: who decides and on which standards?
Ahluwalia et al.
Arch. Dis. Child. Fetal Neonatal Ed. 2008;93:F332-F335.
FULL TEXT  

A Community-Based Study of Acne-Related Health Preferences in Adolescents
Chen et al.
Arch Dermatol 2008;144:988-994.
ABSTRACT | FULL TEXT  

Wide Social Participation in Prioritizing Patients on Waiting Lists for Joint Replacement: A Conjoint Analysis
Sampietro-Colom et al.
Med Decis Making 2008;28:554-566.
ABSTRACT  

Doctors' and nurses' attitudes towards neonatal ethical decision making in Ireland
Samaan et al.
Arch. Dis. Child. Fetal Neonatal Ed. 2008;93:F217-F221.
ABSTRACT | FULL TEXT  

Cost-effectiveness of Head Computed Tomography in Infants With Possible Inflicted Traumatic Brain Injury
Campbell et al.
Pediatrics 2007;120:295-304.
ABSTRACT | FULL TEXT  

Quality of life and congenital heart defects: comparing parent and professional values
Knowles et al.
Arch. Dis. Child. 2007;92:388-393.
ABSTRACT | FULL TEXT  

Self-Perceived Health-Related Quality of Life of Former Extremely Low Birth Weight Infants at Young Adulthood
Saigal et al.
Pediatrics 2006;118:1140-1148.
ABSTRACT | FULL TEXT  

Advocating for the Very Preterm Infant
Janvier and Barrington
Pediatrics 2006;118:429-430.
FULL TEXT  

Outcome of extreme prematurity: as information increases so do the dilemmas.
Watts and Saigal
Arch. Dis. Child. Fetal Neonatal Ed. 2006;91:F221-F225.
ABSTRACT | FULL TEXT  

International Comparison of Care for Very Low Birth Weight Infants: Parents' Perceptions of Counseling and Decision-Making
Partridge et al.
Pediatrics 2005;116:e263-e271.
ABSTRACT | FULL TEXT  

Preferences and Willingness to Pay for Health States Prevented by Pneumococcal Conjugate Vaccine
Prosser et al.
Pediatrics 2004;113:283-290.
ABSTRACT | FULL TEXT  

Cost-Effectiveness of Inhaled Nitric Oxide in the Treatment of Neonatal Respiratory Failure in the United States
Angus et al.
Pediatrics 2003;112:1351-1360.
ABSTRACT | FULL TEXT  

Newborn Screening by Tandem Mass Spectrometry for Medium-Chain Acyl-CoA Dehydrogenase Deficiency: A Cost-Effectiveness Analysis
Venditti et al.
Pediatrics 2003;112:1005-1015.
ABSTRACT | FULL TEXT  

Cardiology
Arch. Dis. Child. 2003;88:A48-49.
FULL TEXT  

Stability of Maternal Preferences for Pediatric Health States in the Perinatal Period and 1 Year Later
Saigal et al.
Arch Pediatr Adolesc Med 2003;157:261-269.
ABSTRACT | FULL TEXT  

Changing Characteristics of Neonatal Follow-up Studies
O'Shea
NeoReviews 2001;2:e249-256.
FULL TEXT  

Attitudes of Parents and Health Care Professionals Toward Active Treatment of Extremely Premature Infants
Streiner et al.
Pediatrics 2001;108:152-157.
ABSTRACT | FULL TEXT  

Topical Review: Outcome Measures in Pediatric Neurology: Why Do We Need Them?
Ronen et al.
J Child Neurol 2000;15:775-780.
ABSTRACT  

Informed Decisions for Extremely Low-Birth-Weight Infants
Culver et al.
JAMA 2000;283:3201-3202.
FULL TEXT  

Bone marrow transplantation versus periodic prophylactic blood transfusion in sickle cell patients at high risk of ischemic stroke: a decision analysis
Nietert et al.
Blood 2000;95:3057-3064.
ABSTRACT | FULL TEXT  

Decisions Regarding Treatment of Seriously Ill Newborns
Fost
JAMA 1999;281:2041-2043.
FULL TEXT  





HOME | CURRENT ISSUE | PAST ISSUES | TOPIC COLLECTIONS | CME | SUBMIT | SUBSCRIBE | HELP
CONDITIONS OF USE | PRIVACY POLICY | CONTACT US | SITE MAP
 
© 1999 American Medical Association. All Rights Reserved.