Health-Related Quality of Life from Adolescence to Adulthood Following Extremely Preterm Birth.

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

STUDY DESIGN: The EPICure study comprises all births <26 weeks of gestation in the United Kingdom (UK) and Ireland in 1995 and term-born controls recruited at age 6. 129 participants born extremely preterm and 65 controls were followed up at the 19-year assessment. HRQL was measured by the Health Utilities Index Mark 3 (HUI3) multi-attribute utility (MAU) scores. Only parent-reported HRQL was available at 11 years of age.

RESULTS: Participants born extremely preterm without neurodevelopmental impairment had significantly lower MAU scores at 19 years than controls (median [interquartile range]: 0.91 [0.79, 0.97] vs 0.97 [0.87, 1.00], p=0.008); 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 (0.74 vs 0.58, p=0.01), 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=0.01) and from 1.00 to 0.97 for controls (P = .02).

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