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.