Outcome of extremely premature infants at early school age: health-related quality of life and neurosensory, cognitive, and behavioral outcomes in a population-based sample in northern Germany.

PURPOSE

The study aimed at collecting regional data to support and establish evidence-based decision-making.

METHODS

We investigated a cohort of 154 preterm infants with gestational age <27+0 weeks born between 1997 and 1999 in a defined region of Northern Germany regarding neurosensory and cognitive outcomes, overall disability status, behavioral problems, and health-related quality of life at the age of seven to nine years (mean: eight years, SD seven months).

RESULTS

92 (60%) infants survived, 75 of these 92 (82%) were followed-up. Rates of disability were high: only 27 (36%) showed 'no dysfunction' of neurosensory status, 33 (44%) 'mild dysfunction', 5 (7%) 'moderate dysfunction' and 10 (13%) 'severe dysfunction', including 8 (11%) with non-ambulatory cerebral palsy. 19 (26%) were mentally retarded. Parents reported behavioral problems in 21 (28%), health-related quality of life was lower in preterm infants compared to a representative normal sample. In multivariate analyses IVH III-IV/PVL was an independent risk factor for adverse outcomes. Behavior problems were predicted by low IQ and lower educational level of the mother.

CONCLUSIONS

Overall our results confirm high levels of mortality and morbidity in extremely immature infants. Regional data should include mortality, morbidity and health-related quality of life to adequately inform parents about the prognosis.