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.