Self-perceived Health Status and Health-Related Quality of Life of Extremely Low-Birth-Weight Infants at Adolescence

OBJECTIVES: To estimate and to compare the self-assessed health status and health-related quality of life of extremely low-birth-weight (ELBW) and control infants during adolescence. DESIGN: Prospective, observational study of an inception cohort with a concurrent control group. SETTING: Geographically defined region in central-west Ontario. PARTICIPANTS: We interviewed 141 (83 percent) of 169 ELBW survivors born between 1977 and 1982 and 124 (86 percent) of 145 controls aged between 12 and 16 years. In addition, proxy responses obtained from parents were used for 9 severely impaired teenagers. MAIN OUTCOME MEASURES: Assessments of health status (6 attributes), measured with the Health Utilities Index Mark 2 classification system, and health-related quality of life (utilities), quantified with 2 preference measurement techniques, were used to quantify each participants self-reported, subjectively defined health state and 4 preselected hypothetical health states. RESULTS: Adolescents who were ELBW infants reported a higher number of attributes affected, as well as more complex and severe limitations in cognition, sensation, self-care, and pain, compared with controls. Statistically significant differences for the teenagers' health-related quality of life were noted between ELBW and control teenagers in the mean utility scores (0.87 +/- 0.26 vs 0.93 +/- 0.11; P=.02 on a conventional scale where O=dead and 1.00=perfect health). However, a similar percentage of ELBW and control teenagers (71 percent vs 73 percent) gave utility ratings of more than 0.95 for their health status. CONCLUSIONS: Direct measures of self-reported health status and utility scores indicated that, as a cohort, adolescents who were ELBW infants suffer from a greater burden of morbidity and rate their health-related quality of life as significantly lower than control teenagers. Nevertheless, the vast majority of ELBW respondents view their health-related quality of life as quite satisfactory and are difficult to distinguish from controls.