Criteria for Determining Disability in Infants and Children: Low Birth Weight: Summary

The Social Security Administration (SSA) of the Department of Health and Human Services requested that the Agency for Healthcare Research and Quality (AHRQ), through its Evidence-based Practice Center (EPC) program, produce an evidence report to determine whether specific factors or a combination of factors alone or in addition to birth weight predict significant developmental disability in former premature infants and whether premature infants with such factors have long-term developmental disabilities. This evidence report is prepared to assist the SSA in updating its Listing of Impairments, and revising its disability policy, as may be appropriate. This report does not provide or suggest a new listing of impairments. This report examines the evidence that Very Low Birth Weight (VLBW) in infants (birth weight <1,500 grams) with or without other conditions is associated with long-term disabling outcomes. The primary outcomes of interest included in this report are cerebral palsy (CP), mental retardation (MR), hearing/speech/ language/behavioral impairments, visual impairments, adverse pulmonary function, and disrupted growth. The category of VLBW infants was chosen because it is well recognized to represent a population of infants, primarily premature infants, at increased risk for acute and chronic impairments related to their immaturity. VLBW is often divided into subcategories of lower birth weights, such as less than 1,250, less than 1,000, and less than 750 grams, to facilitate analyses of infants within different birth weight strata. Extremely Low Birth Weight (ELBW) infants are often defined as infants with birth weight less than 1000 grams, although this definition may vary among studies by as much as 250 grams in either direction. In general, the lower the birth weight, the greater the degree of immaturity, and the greater the risk for serious complications. Birth weight, however, is not a perfect measure of immaturity since some infants may have birth weights that are disproportionately large or small for their gestational age. Many studies appropriately and preferably use gestational age as the marker of prematurity. Similar to birth weight, gestational age categories of premature infants often include groupings of premature infants less than 32 weeks gestation, less than 30 weeks gestation, less than 28 weeks gestation; or less than 26 weeks gestation. Less than 32 weeks gestational age is considered by some authorities as “very premature” and less than 28 weeks gestational age as “extremely premature.” Premature birth is an important public health problem due to the number of premature births each year, the serious acute complications of prematurity, and the long-term sequelae directly related to the vulnerability of VLBW infants. Among the four million births in the United States during the year 2000, about 58,000 (1.4%) were VLBW (<1,500 grams). Although VLBW is a relatively small proportion of total births in the USA, this category of infants accounts for the highest neonatal mortality and greatest morbidity among newborns. The long-term complications result in significantly increased tangible and intangible lifelong costs to the family and society for medical care as well as for ongoing ancillary health and educational services. Advances in neonatal/perinatal medicine have improved the survival and the quality of survival Evidence Report/Technology Assessment Number 70