Reduced health-related quality of life in children born extremely preterm in 2006 compared with 1995: the EPICure Studies

OBJECTIVE: To compare health-related quality of life (HRQL) in childhood for extremely preterm (EP) births before 26 weeks of gestation in England in two eras: 1995 and 2006. DESIGN: Prospective cohort studies. SETTING: School or home-based assessments at 11 years of age. PARTICIPANTS: Available data for 88 EP children born before 26 weeks of gestation in 2006 (EPICure2) were compared with those of 140 born in England during 1995 (EPICure). To account for social secular trends, the comparison between eras was also made for term-born controls as reference. MAIN OUTCOME MEASURES: HRQL was measured using the parent-completed Health Utilities Index (HUI) questionnaire with utility scores calculated using the HUI3 classification system. Eight attributes were assessed: vision, hearing, speech, ambulation, dexterity, emotion, cognition and pain. RESULTS: At 11 years, mean utility scores were significantly lower in EPICure2 (2006) than in EPICure (1995; Δ −0.12, 95% CI −0.20 to –0.04). The difference increased (Δ −0.27, 95% CI −0.41 to –0.12) after adjusting for significant perinatal and demographic differences between cohorts. Rates of suboptimal function were increased in EPICure2 for all eight attributes, but statistically significant differences were only found in speech (p=0.004) and dexterity (p=0.020). After excluding children with severe neurodevelopmental impairment, the adjusted difference between cohorts remained significant but attenuated (−0.14 (−0.26 to –0.01)). Mean utility scores for controls were similar between cohorts (Δ −0.01 (−0.04 to 0.02)). CONCLUSIONS: Using parent report, there was a clinically significant decline in HRQL ratings for EP children over time. Areas contributing the most to the decline were speech and dexterity. TRIAL REGISTRATION NUMBER: ISRCTN86323684.