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 8 years 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.