To examine self-reported and parent-reported health-related quality of life (HRQL) in adults born extremely preterm compared with control participants born at term and to evaluate trajectories of health status from adolescence to early adulthood.

The EPICure study comprises all births <26 weeks of gestation in the United Kingdom and Ireland in 1995 and control participants born at term recruited at age 6 years. In total, 129 participants born extremely preterm and 65 control participants were followed up at the 19-year assessment. HRQL was measured by the Health Utilities Index Mark 3 multiattribute utility (MAU) scores. Only parent-reported HRQL was available at 11 years of age.

Participants born extremely preterm without neurodevelopmental impairment had significantly lower MAU scores at 19 years than controls (median [IQR]: 0.91 [0.79, 0.97] vs 0.97 [0.87, 1.00], P = .008); those with impairment had the lowest scores (0.74 [0.49, 0.90]). A 0.03-0.05 difference is considered clinically significant. Parent-reported findings were similar. Participants born extremely preterm with impairment rated their health significantly better than their parents did (0.74 vs 0.58, P = .01), in contrast to those without impairment and controls. Between 11 and 19 years, median parent-reported MAU scores decreased from 0.87 to 0.77 for participants born extremely preterm (P = .01) and from 1.00 to 0.97 for control participants (P = .02).

Among young adults born extremely preterm, both participants and parents rated their health status less favorably than control participants born at term. The decline in MAU scores from adolescence to early adulthood following extremely preterm birth indicates continuing health issues in young adult life.