Profiling the preterm or VLBW born adolescent; implications of the Dutch POPS cohort follow-up studies

•Follow-up of the nationwide POPS cohort has provided a unique profile of Dutch adolescents who were born very preterm.•The participants of the POPS cohort experienced more impairments on a variety of outcome measures, compared to norm data.•Major handicaps remained stable as the preterm born POPS cohort grew older, but minor handicaps and disabilities increased.•At 19 years of age, only half of the survivors had no disabilities or handicaps, especially those born SGA are vulnerable.•Long-term outcomes can help support these children in reaching adulthood, and stress the need for long term follow-up.

In 1983, data of a unique nationwide cohort of 1338 very preterm (< 32 weeks of gestation) or VLBW (birth weight < 1500 g) infants in the Netherlands was collected and followed at several ages until they reached the age of 19 years. At 19 years of age a more extensive follow-up study was done, including questionnaires, tests on a computer and a full physical exam. These studies provide insight into how Dutch adolescents at 19 years of age, who were born very preterm or with a very low birth weight (VLBW), reach adulthood. At 19 years, 705 POPS participants participated (74% of 959 still alive). Outcome measures at 19 years included: physical outcomes (e.g. blood pressure), cognition, behavior, quality of life, and impact of handicaps. The POPS participants showed more impairments on most outcome measures at various ages, compared to norm data. Major handicaps remained stable as the children grew older, but minor handicaps and disabilities increased. At 19 years of age, only half (47.1%) of the survivors had no disabilities and no minor or major handicaps. Especially those born small for gestational age (SGA) seem most vulnerable. These long-term results help to support preterm and SGA born children and adolescents in reaching independent adulthood, and stress the need for long term follow-up studies and to promote prevention of disabilities and of preterm birth itself.