Changes over time in quality of life of school-aged children born extremely preterm: 1991-2005

Objective To compare health-related quality of life (HRQOL) at 8 years in children born extremely preterm (EP) with contemporaneous term-born controls over three epochs: 1991-92, 1997 and 2005. Design Prospective recruitment of geographic cohorts across three distinct eras. Utilities were calculated from the parent-completed Health Utilities Index (HUI), version 2 (1991-92 and 1997 cohorts) and version 3 (2005 cohort). Differences in utilities >0.05 are clinically important. Setting The state of Victoria, Australia. Patients 475 EP (<28 weeks' gestation) and 570 term controls. Main outcome measures Utilities of children born EP compared with term controls within each era, and paired differences between an EP and matched controls compared across eras. Results Overall, 86% of survivors had utility data at 8 years of age; 475 EP and 570 controls. In all eras, parent-reported utilities were lower for children born EP compared with controls (difference in medians (95% CIs); 1991-92, -0.053 (-0.071 to -0.035); 1997, -0.053 (-0.072 to -0.034); 2005, -0.082 (-0.097 to -0.068)). Mean differences (MD) between EP children and matched controls within each era were lower in the 2005 cohort compared with both the 1991-92 cohort (MD -0.054, 95% CI -0.097 to -0.010) and the 1997 cohort (MD -0.053, 95% CI -0.097 to -0.009). Conclusion Children born EP in the postsurfactant era have clinically important reductions in parent-reported HRQOL compared with controls, which may be worsening over time.