Comparison of the health-related quality of life of extremely low birth weight children and a reference group of children at age eight years

OBJECTIVES: To estimate and compare the health-related quality of life (HRQOL) of extremely low birth weight (ELBW) children and a reference group of children at age 8 years. DESIGN: The study utilized a utility equation from preference measures derived from a random sample of 194 general-population parents surveyed in 1987. This equation was applied to multiattribute health state descriptions of the study participants. Utilities can be used to estimate a single cardinal value between 0.0 and 1.0 (0 = dead; 1 = perfect health) to reflect the global HRQOL for that individual. SETTING: Geographically defined region in central-west Ontario, Canada. PARTICIPANTS: One hundred fifty-six ELBW survivors born between 1977 and 1982, and 145 reference children from the general population, matched for age, sex, and socioeconomic status to the index cases. RESULTS: Mean HRQOL scores were lower for ELBW (0.82, SD 0.21) than for reference group (0.95, SD 0.07; p < 0.0001). The ELBW group had greater variability in HRQOL scores (p < 0.001), and the distribution was such that 50% of ELBW children but only 10% of the reference group had scores < 0.88. Only 14% of ELBW children were assigned HRQOL scores of 1.0, compared with 50% of reference subjects (p < 0.0001). CONCLUSIONS: These results demonstrate that from the perspective of the general population, the overall long-term burden experienced by ELBW children is greater than that for reference children. The methods used to assess HRQOL have wide applicability for evaluation of different treatment programs.