Children born with extremely low-birth-weight have considerable health and educational needs

July 19, 2005

Children born in the 1990s weighing less than 2.2 lbs. are at significantly increased risk of experiencing chronic health conditions and functional and educational limitations compared to normal-birth-weight children, according to a study in the July 20 issue of JAMA.

Advances in perinatal care in the 1990s resulted in dramatic increases in the survival of extremely low-birth-weight (ELBW, less than 1000 grams [2.2 lbs.]) infants, according to background information in the article. There is little information on how these children function at school age when neurological, cognitive, and health status has to a large extent stabilized. Information on the overall functioning and special health care needs of recent surviving ELBW children is needed to plan for the medical and educational services that they will require at school age.

Maureen Hack, M.B., Ch.B., of Case Western Reserve University, Cleveland, and colleagues conducted a comprehensive examination of health outcomes at age 8 years in a group of ELBW infants born 1992 through 1995.

Outcomes included functional limitations and special health care needs together with the more traditional measures of neurological and developmental status. The study included 219 ELBW children and 176 normal-birth-weight (NBW) controls of similar sociodemographic status. The children were examined and parents completed a questionnaire concerning their child.

The researchers found that after adjusting for sociodemographic status and sex, ELBW children had significantly more chronic conditions than NBW controls, including functional limitations (64 percent vs. 20 percent), compensatory dependency needs (48 percent vs. 23 percent), and services above those routinely required by children (65 percent vs. 27 percent). These differences remained significant when the 36 ELBW children with neurosensory impairments were excluded. Specific diagnoses and disabilities for ELBW vs. NBW children included cerebral palsy (14 percent vs. 0 percent), asthma (21 percent vs. 9 percent), vision of less than 20/200 (10 percent vs. 3 percent), low IQ of less than 85 (38 percent vs. 14 percent), limited academic skills (37 percent vs. 15 percent), poor motor skills (47 percent vs. 10 percent), and poor adaptive functioning (69 percent vs. 34 percent).

"In the United States in 2002, there were 22,845 live births with a birth weight of 500 to 999 g [1.1 to 2.2 lbs.], of whom approximately 70 percent survived. Our findings underscore the extraordinary costs of care that will be needed to manage the medical, educational, and other service needs of the large proportion of these ELBW children who develop chronic conditions. Proactive planning for the long-term health and educational care needs of all ELBW survivors is essential to optimally treat and possibly improve outcomes through preventative and early intervention services. The American Academy of Pediatrics has emphasized the importance of providing a medical home for children with special health care needs, coordinating their care, involving family, and assisting in navigation of the complex federal, state, and local systems that provide services required by these children. All of these services are highly relevant for the continuing long-term care of ELBW children who survive as a result of neonatal intensive care," the authors conclude.

(JAMA. 2005;294:318-325. Available pre-embargo to the media at http://www.jamamedia.org).
Editor's Note: This study was supported by grants from the National Institutes of Health (NIH).

Editorial: Outcomes for Extremely Low-Birth-Weight Infants - Disappointing News

In an accompanying editorial, Jon E. Tyson, M.D., M.P.H., of the University of Texas Health Science Center and Houston Medical School, and Saroj Saigal, M.D., of McMaster University, Hamilton, Ontario, discuss the study by Hack et al.

"The current state-of-the-art in follow-up studies might be enhanced to increase their value and facilitate better outcomes for high-risk infants by considering the following strategies. First, follow-up assessments should be performed and reported for all survivors in the lowest gestational age categories as well as all those in the lowest birth-weight categories. ... Second, emphasis should be placed on performing population-based follow-up studies in the United States, as in other countries. Virtually all such studies have been performed outside the United States. ... Third, to help in addressing ethical dilemmas in the care of marginally viable infants, the mortality and long-term morbidity of these infants should be related to treatment decisions to forgo or withdraw intensive care."

"Fourth, quality of life should be assessed in long-term survivors. Despite systematically higher disability rates among ELBW vs. NBW survivors, Canadian studies have reported minimal difference in their self-assessed quality of life in adolescence and early adulthood. Whether this is true in U.S. populations is an important question. And fifth, the use of follow-up assessments should be expanded in testing interventions used before or after nursery discharge to reduce adverse medical, neurodevelopmental, or functional outcomes."

"Most of these strategies would entail considerably more effort and expense. However, the best possible follow-up studies are crucial to a clear understanding of the outcome of small premature infants, the beneficial or harmful effects of perinatal treatment decisions, and the long-term needs of these children for special medical or educational services," the authors write. (JAMA. 2005;294:371-373. Available pre-embargo to the media at http://www.jamamedia.org).
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