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Clinicians should give high priority to parents' wishes in decisions about neonatal ICU care for very low birthweight infants

Neonatal technology has improved the survival of extremely low birthweight (ELBW) infants of borderline viability. The issue of whether or not to actively treat such infants continues to be debated. A new study suggests that ELBW adolescents and their parents often report that despite their severe disabilities, these young people have a decent quality of life, an opinion that may not be shared by their doctors. As a result, the parents' perspective should be given priority in neonatal intensive care decisions about ELBW infants, recommend Saroj Saigal, M.D., F.R.C.P., and colleagues at McMaster University. The study was supported in part by the Agency for Healthcare Research and Quality (HS08385) through its Patient Outcomes Research Team (PORT) project on strategies for care of very low birthweight infants, which is led by Nigel Paneth, M.D., M.P.H., of Michigan State University (Select for clinical highlights of the Low Birthweight PORT Final Report.

The researchers developed a preschool health status classification system for children less than 4 years of age based on the same conceptual framework as the Health Utilities Index (HUI) systems. The HUI allows individuals to score certain health states from perfect to worse-than-death and to compare their preference for one health state with another. These researchers have been involved in assessing the health status and health-related quality of life (HRQL) of ELBW children since the early 1990s. At age 8 years, the children's health status was classified on the basis of assessments performed by health professionals.

The 150 ELBW infants and 124 matched controls described in this study were born in Ontario between 1977 and 1982. The mean age of the children at the time of the interview was 14 years. The teenagers rated their own health states and four preselected hypothetical health states. Their parents were asked to rate the health status of their children and to imagine themselves living in the health state of their own child for the next 60 years.

A total of 100 physicians and 103 neonatal nurses participated in the study and rated five hypothetical health states ranging from a mild, single-attribute problem to having multiple complex problems. The researchers then compared preferences for selected hypothetical health states from the perspectives of the health care professionals, ELBW teens, and their parents.

They found that ELBW teens valued their quality of life, despite their sometimes multiple impairments. Also, ELBW adolescents and their parents provided higher ratings for severely disabled health states than did health professionals.

These findings suggest that the perceived value of life changes appreciably when an individual has to cope with a disability. They also confirm that the HRQL measurement adds an important dimension to the conventional biomedical approach of enumerating neurologic impairments and other disabilities.

More details are in "Perception of health status and quality of life of extremely low-birth weight survivors: The consumer, the provider, and the child," by Dr. Saigal, in the June 2000 issue of Clinics in Perinatology 27(2), pp. 403-419.

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