BACKGROUND:

To assess functional disability in children born before 26 weeks of gestation at 11 years of age and the stability of findings in individuals between 6 and 11 years of age.

METHODS:

Of 307 surviving children born in 1995, 219 (71%) were assessed at 11 years of age alongside 153 classmates. Children were evaluated by using standardized tests of cognitive ability and clinical condition at both ages.

RESULTS:

Using classmate data to determine reference ranges, serious cognitive impairment (score of less than -2 SD) was present in 40% of extremely preterm children and 1.3% of classmates (odds ratio [OR]: 50 [95% confidence interval (CI): 12-206]) at 11 years of age. Overall, 38 (17%) extremely preterm children had cerebral palsy; moderate or severe impairment of neuromotor function, vision, and hearing was present in 10%, 9%, and 2% of these children, respectively. Combining impairment across domains, 98 (45%) extremely preterm children had serious functional disability compared with 1% of the classmates (OR: 61 [95% CI: 15-253]); this was more common in boys than girls (OR: 1.8 [95% CI: 1.0-3.1]) and in those born at 23 or 24 weeks' gestation compared with those born at 25 weeks' gestation (OR: 1.8 [95% CI: 1.0-3.1]). The prevalence of serious functional disability was 46% at 6 years of age and 45% at 11 years of age. Using multiple imputation to correct for selective dropout, it is estimated that 50% (95% CI: 44%-57%) of extremely preterm children are free of serious disability at 11 years of age.

CONCLUSIONS:

Extremely preterm children remain at high risk for neurodevelopmental disability at 11 years of age compared with term peers. The prevalence of disability remained stable between 6 and 11 years of age, and large individual shifts in classification of disability were unusual.