Review
Functional outcomes of very premature infants into adulthood

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Summary

The outcomes of very low birth weight survivors born in the early post-neonatal intensive care era have now been reported to young adulthood in several longitudinal cohort studies, and more recently from large Scandinavian national databases. The latter reports corroborate the findings that despite disabilities, a significant majority of very low birth weight survivors are leading productive lives, and are functioning better than expected. This is reassuring, but there are still concerns about future psychopathology, cardiovascular and metabolic problems as they approach middle age. Although these findings may not be directly applicable to the current survivors of modern neonatal intensive care, they do provide a yardstick by which to project the outcomes of future survivors until more contemporaneous data are available.

Introduction

Neonatal intensive care started in the late 1960s in most industrialised countries. The next decade was a transitional period when neonatal intensive care units (NICUs) were being established. It was not until the 1980s that survival of very premature infants started to improve and approached 50%. Reports of the outcomes at adulthood of very low birth weight (VLBW) and extremely low birth weight (ELBW) infants started to emerge in the early 21st century [1], *[2].

An important reason to determine the life course of these high-risk infants is that children are moving targets, and their outcomes, experiences and expectations change over time [3]. Many limitations stabilise, or improve, and newer problems may emerge depending on the academic and social challenges that they may face. Further, with increasing age, there are fears that they may encounter a higher prevalence of cardiovascular and metabolic problems than the normal term population [4], [5], [6], *[7], [8], [9]. Thus, the emergence of problems is age-dependent and not necessarily cumulative. Physicians who will assume their subsequent care need to be aware of the special challenges that the ‘aging’ premature infants may face in the future, some of which might still be unknown.

This issue is devoted to the long-term outcome of the tiniest or most immature babies. Several eminent international investigators are presenting a broad array of outcomes. Although many outcomes are interrelated, in the interest of avoiding overlap, this chapter will focus on the residual limitations and challenges, adult role functioning, life achievements, social functioning, and self-perceived quality of life (QoL). Since there are very few studies of exclusively ELBW infants, this chapter will also include former VLBW or very preterm (VP) infants <29 weeks of gestation who have reached adulthood.

Section snippets

Methodological limitations

Due to the lack of ultrasound confirmation to determine the accuracy of gestational age, cohort studies from the earlier era have reported the outcomes mainly by birth weight categories of <1001 g or 1000–1500 g. The bias in this artificial cut-off is well recognised, and the assumption is that the majority of ELBW infants were <29 weeks of gestation. The incidence of small for gestational age varied between the diverse populations and by the growth curves used, and ranged between 18% and 24%.

Neurosensory impairments

Overall, there appears to be stability in the incidence of neurological impairments from school age to adulthood [18]. Data from both cohort studies and National Registries confirm that there is a gradient in all neurosensory impairments based on gestational age: higher impairments are found at lower gestational ages *[11], *[12]. These impairments include CP, blindness, deafness, or cognitive deficits, and some also include seizures/epilepsy. CP is one of the most common disabilities among

Educational achievements

In terms of school completion, a gestational age gradient was again observed in the Norwegian study [11]: at 23–27 completed weeks of gestation 68% had completed high school, and 25% had completed a bachelor's degree: the corresponding figures for 28–30 weeks of gestation were 70% and 28%, compared with 75% and 35% for those born at term. Although Lefebvre et al. [21] reported that fewer ELBW subjects had obtained a secondary school diploma compared to normal birth weight group (56% vs 85%),

Functional status and quality of life

How do we define functional outcomes, and what variables and measurement tools should we consider in assessing the same? In the past, the ability of a person to perform the routine activities of daily living, as well as leisure and socially allocated roles, was considered as an acceptable functional outcome. Functional status is therefore a way of reporting the limitations resulting from a disease or illness in an ‘objective’ manner.

Although most studies show that the general health of former

Prematurity, aging, and mortality in young adulthood

In a Norwegian meta-analysis, an inverse relationship was found between birth weight and mortality in adulthood [48]. There was a 6% lower risk of deaths per kilogram among higher birth weights (adjusted HR: 0.94; 95% CI: 0.92–0.97). However, the first large study to gauge the effects of gestational age on mortality at young adulthood was derived from the National Birth and Death Registry from Sweden [15]. Included in this study were singletons born between 1973 and 1979 and who survived the

Conclusion

Although most VLBW infants go through significant difficulties in childhood and adolescence, by and large, by the time they reach adulthood, they do better than expected in terms of ‘adult functioning’. Many young adults may still have chronic health conditions and some functional limitations, but despite that, they seem to be fairly resilient and lead relatively normal lives [1], *[2], [3], *[11], *[29]. A most rewarding finding is that a significant majority of VLBW and ELBW participants

Conflict of interest statement

None declared.

Funding sources

None.

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