COMPARISON OF THE HEALTH-RELATED QUALITY-OF-LIFE OF EXTREMELY LOW-BIRTH-WEIGHT CHILDREN AND A REFERENCE GROUP OF CHILDREN AT AGE 8 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 utilit y equation from preference measures derived from a random sample of 19 4 general-population parents surveyed in 1987. This equation was appli ed to multiattribute health state descriptions of the study participan ts. 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 centra l-west Ontario, Canada. Participants: One hundred fifty-six ELBW survi vors born between 1977 and 1982, and 145 reference children from the g eneral population, matched for age, sex, and socioeconomic status to t he 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 dis tribution was such that 50% of ELBW children but only 10% of the refer ence group had scores <0.88. Only 14% of ELBW children were assigned H RQOL 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 E LBW children is greater than that for reference children. The methods used to assess HRQOL have wide applicability for evaluation of differe nt treatment programs.