Common Core Assessments in Follow-up Studies of Adults Born Preterm - Recommendation of the Adults Born Preterm International Collaboration

Background: Of all newborns, 1-2% are born very preterm (VP; <32 weeks) or with very low birth

weight (VLBW; ≤1500 g). Advances in prenatal and neonatal care have substantially improved

their survival, and the first generations who have benefited from these advances are now

entering middle age. While most lead healthy lives, on average these adults are characterized by

a number of adversities. These include cardiometabolic risk factors, airway obstruction, less

physical activity, poorer visual function, lower cognitive performance and a behavioral

phenotype that includes inattention and internalizing and socially withdrawn behavior that may

affect life chances and quality of life. Outcomes in later adulthood are largely unknown, and

identifying trajectories of risk or resilience is essential in developing targeted interventions.

Joint analyses of data and maintenance of follow-up of cohorts entering adulthood are essential.

Such analyses are ongoing within the Adults Born Preterm International Collaboration (APIC;

www.apic-preterm.org). Joint analyses require data harmonization, highlighting the importance

of consistent assessment methodologies.

Methods. Principles of Common Core Assessments were discussed at APIC meetings. Experts for

each specific outcome domain wrote the first draft on assessments pertaining to that outcome.

These drafts were combined and reviewed by all authors. Consensus was reached by discussion

at APIC meetings.

Results. We present a recommendation by APIC experts on consistent measures to be used in

adult follow-up assessments.

Conclusion: The recommendation encompasses both “core” measures which we recommend to

use in all assessments of adults born preterm that include the particular outcome. This will allow

comparability between time and location. The recommendation also lists optional measures,

focusing on current gaps in knowledge. It includes sections on study design, cardiometabolic and

related biomarkers, biological samples, lifestyle, respiratory, ophthalmic, cognitive, mental

health, personality, quality of life, sociodemographics, social relationships and reproduction.