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.