Published online February 1, 2007
PEDIATRICS
Vol. 119
No. 2
February 2007, pp.
411-412
(doi:10.1542/peds.2006-3225)
Long-term Health Outcomes of Extremely Premature Infants: In Reply
Saroj Saigal, MD, FRCP(c)
Barbara Stoskopf, RN, MHSc
Lorraine Hoult, BA
Michael Boyle, PhD
Department of Pediatrics
Janet Pinelli, RNC, MScN, DNS
Department of Pediatrics and School of Nursing
McMaster University
Hamilton, Ontario, Canada L8N 3Z5
David Streiner, PhD
Department of Psychiatry
University of Toronto
Toronto, Ontario, Canada M6A 2E1
Nigel Paneth, MD, MPH
Departments of Epidemiology and Human Development
John Goddeeris, PhD
Department of Economics
Michigan State University
East Lansing, MI 48824
We appreciate the opportunity to respond to the perceptive questions raised by Drs Kaempf and Tomlinson regarding our article.1 We have read with interest their recent article on counseling of parents of periviable fetuses and infants.2 We understand the dilemma faced by the authors in their inability to reconcile their guidelines for recommending nonintervention of infants <25 weeks' gestation with the positive self-reported health-related quality of life (QoL) of the subjects in our study.
We address first their specific questions. Ours is a population-based study of a cohort of 397 live births of extremely low birth weight (ELBW [<1000 g]): 56 (14%) infants died before transfer to the tertiary care center; intensive care was not instituted for or was withdrawn from 61 (15%) infants3; 179 survived to hospital discharge (regional survival: 45%; tertiary care center survival: 53%); and over the subsequent years 13 died, which left 166 available for follow-up. In that early era of neonatal intensive care, antenatal counseling was not as formalized as it is today, because the outcomes of ELBW survivors were largely unknown. Decisions regarding noninitiation and/or withdrawal of intensive care, however, were made in consultation with the parents. The information requested by gestational age (best estimate) is shown in Table 1.
The other details requested were provided in Table 1 of our article: 143 (86%) of the subjects participated in the interviews; nearly half of the subjects were in the higher I and II socioeconomic group; 81% were from 2-parent households; only 2% were nonwhite; and all subjects were beneficiaries of the Canadian universal health care system. We do not know whether any of our subjects have read our medical publications. We did send a brief summary of our findings to all parents of the ELBW and control subjects after completion of our previous study at adolescence (mean age: 14 years), but we doubt that our report could have influenced their self-perception 9 years later. Also, the standard gamble technique used by us for obtaining preferences offers an objective approach for measuring subjective phenomena and is less likely to be influenced by preconceived notions.4
By and large, the survival of infants <26 weeks' gestational age, but not the proportion of survivors with impairments, has improved significantly in the last decade. We do not claim that our subjects are entirely representative of the current survivors. However, the proportion of participants in our study who were of <26 weeks' gestational age (22%) was not insignificant. We concede that there are limitations in extrapolating our follow-up data to recipients of modern obstetric and neonatal care and have recommended, therefore, that such studies need to be repeated to also account for different social and economic conditions and diverse cultural, racial, and ethnic populations.1
Finally, the statement by Kaempf and Tomlinson's critics that our subjects are "happy and well adjusted" and that all infants, therefore, should be resuscitated is a gross oversimplification of our findings. Although the majority of our subjects rated their health-related QoL relatively highly, there were both individuals and families who did not. Therefore, we favor individual de cision-making,5 because many factors that may have influenced the positive self-perception need to be considered. However, several studies support our findings that individuals with disabilities place a high value on their QoL.1 Although no one would "choose" to have a disability, most individuals use whatever mechanisms are available to them to carry on with their lives as best as they can, attesting to the extraordinary resilience of many human beings. The question of why individuals with disabilities rate their QoL as high as they do is intriguing, but equally intriguing, perhaps, is the question of why individuals of normal birth weight without disabilities do not rate their QoL any higher.
REFERENCES
- Saigal S, Stoskopf B, Pinelli J, et al. Self-perceived health-related quality of life of former extremely low birth weight infants at young adulthood.
Pediatrics. 2006;118
:1140
–1148[Abstract/Free Full Text]
- Kaempf JW, Tomlinson M, Arduza C, et al. Medical staff guidelines for periviability pregnancy counseling and medical treatment of extremely premature infants.
Pediatrics. 2006;117
:22
–29[Abstract/Free Full Text]
- Saigal S, Rosenbaum P, Hattersley B, Milner R. Decreased disability rate among 3-year-old survivors weighing 501 to 1000 grams at birth and born to residents of a geographically defined region from 1981 to 1984 compared with 1977 to 1980.
J Pediatr. 1989;114
:839
–846[CrossRef][ISI][Medline]
- Green C, Brazier J, Deverill M. Valuing health-related quality of life: a review of health state valuation techniques.
Pharmacoeconomics. 2000;17
:151
–165[CrossRef][ISI][Medline]
- 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[Abstract]
PEDIATRICS (ISSN 1098-4275). ©2007 by the American Academy of Pediatrics
