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Extremely low birthweight (ELBW) infants (1 to 2 pounds) tend to have lifelong problems that range from neurosensory impairments (NSIs) such as blindness and deafness to neurodevelopmental problems, including behavioral and learning disorders. They also tend to suffer from poor physical growth, recurrent infections, and many hospitalizations.
Two recent studies supported by the Agency for Healthcare Research and Quality (HS08385, principal investigator Nigel Paneth, M.D., of Michigan State University) show that ELBW teens are much more apt than normal birthweight teens to have problems with reading, spelling, and arithmetic and to need special education assistance. Despite their greater burden of cognitive and physical disability, ELBW teens nevertheless manage to have a fairly high quality of life, according to their parents.
Saigal, S., Hoult, L.A., Streiner, D.L., and others. (2000, February). "School difficulties at adolescence in a regional cohort of children who were extremely low birth weight." Pediatrics 105(2), pp. 325-331.
This study of 150 ELBW teens (501 to 1,000 g) aged 12 to 16 years, who were born in Ontario, Canada, between 1977 and 1982, found that they scored 13 to 18 points lower on cognitive and academic achievement tests than an age-matched group of teens whose birthweight was normal. ELBW teens who weighed less than 750 g at birth fared worst, with less than half of them achieving normal (85 or higher) cognitive and academic achievement scores. Decreasing birthweight was also associated with lower scores on reading, spelling, and arithmetic, with children born at less than 750 g scoring the lowest.
Over half (58 percent) of ELBW teens were receiving special educational assistance and/or had repeated a grade compared with 13 percent of normal birthweight teens. Also, 22 percent of ELBW teens required full-time educational assistance compared with none of the normal birthweight teens. Even the apparently normal ELBW group (those without NSIs) still scored from 8 to 11 points lower on achievement tests than their normal birthweight peers. The odds of scoring below the normal range (less than 85) on most psychometric measures were 8- to 13-fold higher for children who weighed less than 750 g at birth and 4- to 6-fold higher for those who weighed 750 g or more, compared with normal birthweight teens.
In addition, only 57 percent of ELBW versus 94 percent of normal birthweight teens were in regular classes. Even apparently normal ELBW teens were having significantly more school difficulties than normal birthweight teens (46 vs. 11 percent). A comparison of this study with an earlier study by these researchers of 8-year-old ELBW children shows that the gap in the cognitive performance of ELBW children widens as they become older. On the other hand, these children were born before many innovations in neonatal intensive care occurred that potentially could have improved their outcomes.
Saigal, S., Rosenbaum, P.L., Feeny, D., and others. (2000, March). "Parental perspectives of the health status and health-related quality of life of teen-aged children who were extremely low birth weight and term controls." Pediatrics 105(3), pp. 569-574.
Interviews of parents of 149 ELBW teens (including 41 with NSIs) and 126 teens of normal birthweight revealed that parents of ELBW teens were fully aware that their children were more disabled than their age-matched peers but nevertheless believed that their children's health-related quality of life (HRQOL) was fairly high. They noted a lower proportion of their teens as having no functional limitations (that is, perfect health) compared with parents of normal birthweight (NBW) teens (34 vs. 60 percent). Parents were asked to assess their children's functioning for six attributes: sensation (vision, hearing, and speech), mobility, emotion, cognition, self-care, and pain.
Parents reported that one or two attributes were affected in 47 percent of ELBW teens compared with 39 percent of controls and that three to six attributes were affected in 19 percent of ELBW teens compared with 2 percent of controls. For example, a significantly higher proportion of ELBW than NBW teens were seen by their parents to have moderate to severe disabilities in sensation (15 vs. 2 percent), mobility (3 vs. 0 percent), cognition (23 vs. 2 percent), and self-care (5 vs. 0 percent).
Despite their children's disabilities, 53 percent of parents of ELBW teens compared with 72 percent of parents of NBW teens gave their children a score of 1.0 (perfect health). However, the ELBW distribution was more skewed, with 4.2 percent of ELBW teens having scores below 0.40 compared with none in this range among parents of NBW teens. The researchers found the variation in parents' perceptions consistent with the severity of their children's disabilities. The fact that many parents of ELBW teens considered their children to have good to excellent general health despite these disabilities may reflect their resilience in coping with these difficulties.
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