What matters in the long term: Reflections on the context of adult outcomes versus detailed measures in childhood

SummaryThe primary goals of modern perinatal intensive care are to improve survival and neurodevelopmental outcomes of high-risk infants. The detailed assessments at follow-up in the early years provide us with valuable information on the performance of the children at a given point in time. With increasing age of the subjects, the investigation into their outcome has evolved from a narrow focus of neurodevelopmental status to broader considerations of their overall morbidity, accomplishments and self-perception of their health and quality of life. In this chapter, we will reflect on the importance of the detailed measures in the early years, the impact of moderating background variables on predictability of outcomes, implications for the future and what really matters at young adulthood for infants born prematurely. We will explore the perspectives of different respondents and the need to look beyond the traditional measures to obtain complementary information.