Health-Related Quality of Life Trajectories of Extremely Low Birth Weight Survivors into Adulthood

OBJECTIVES: To compare the health-related quality of life (HRQL) trajectories of a regional cohort of extremely low birth weight (ELBW, <1000 g) survivors (births from 1977 to 1982) and a group of normal birth weight (NBW) controls, at 3 ages: 12-16 years, 22-26 years, and 29-36 years, spanning over 20 years. We hypothesized that the HRQL of the ELBW cohort would be significantly compromised compared with their NBW peers, and that neurosensory impairments (NSI) would have an additional negative effect. STUDY DESIGN: We used the Health Utilities Index Mark 3, in which health status was self-assessed and utility scores were derived from community preferences; multilevel modeling was used to delineate trajectories of HRQL among ELBW survivors with (n = 37) and without NSI (n = 116), and NBW controls (n = 137). RESULTS: Adjusting for participant sex and socioeconomic status at age 8 years, ELBW survivors with NSI had consistently lower HRQL compared with both ELBW survivors without NSI and NBW controls, from adolescence through to adulthood (β = -0.264; P < .001). ELBW survivors without NSI also had significantly lower HRQL compared with NBW controls (β = -0.092; P < .01). At all ages, differences seen in the Health Utilities Index Mark 3 scores between ELBW participants and NBW controls were clinically important, though there was no differential rate of decline between the 2 groups. CONCLUSIONS: ELBW survivors manifest meaningfully poorer HRQL from their early teens through their mid-30s. Individuals with NSI appear to represent a distinct group of ELBW survivors with substantially lower HRQL at all ages. Information on HRQL can be helpful in prioritizing research and intervention strategies.