Parent-reported health in extremely preterm and extremely low-birthweight children at age 8years compared with comparison children born at term

Aim Extremely preterm and extremely low-birthweight (EP/ELBW) children (<28 completed weeks' gestation; birthweight <1000g) have a high risk of long-term adverse outcomes. Clinical developmental surveillance is difficult to achieve for all of these children. Our aim was to study the ability of two parent-completed questionnaires to differentiate health status of EP/ELBW children from that of a comparison group of children born at term, and to screen EP/ELBW children for disability compared with the ability of a multidisciplinary clinical assessment. Method A geographic cohort of 189 EP/ELBW children (100 males, 89 females) and a comparison group of 173 term children (92 males, 81 females) born in 1997 were assessed at the age of 8years using parent questionnaires (the Child Health Questionnaire [CHQ] and the Health Utilities Index Mark 2 [HUI2]) and a multidisciplinary clinical assessment. The questionnaires and clinical assessment were compared with respect to their ability to differentiate between the health status of EP/ELBW children and children born at term and also to identify children with a disability. Results The HUI2 was better than the CHQ at differentiating the health status of EP/ELBW and comparison children. Moderate and severe disability status were identified by the HUI2 with sensitivity ranging from 86 to 97%, specificity from 60 to 64%, positive predictive values from 34 to 39%, and negative predictive values from 95 to 99%. Interpretation The HUI2 had suitable sensitivity and specificity to be used as a developmental screening tool for EP/ELBW children, but the CHQ did not. Given its low positive predictive values, however, the HUI2 should be viewed with caution as a final outcome measure for intervention trials, and would be better used to identify at-risk children who need a definitive clinical assessment.