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 (ELB W) and control infants during adolescence. Design.-Prospective, observ ational study of an inception cohort with a concurrent control group. Setting.-Geographically defined region in central-west Ontario. Partic ipants.-We interviewed 141 (83%) of 169 ELBW survivors born between 19 77 and 1982 and 124 (86%) of 145 controls aged between 12 and 16 years . In addition, proxy responses obtained from parents were used for 9 s everely impaired teenagers. Main Outcome Measures.-Assessments of heal th status (6 attributes), measured with the Health Utilities Index Mar k 2 classification system, and health-related quality of life (utiliti es), quantified with 2 preference measurement techniques, were used to quantify each participant's self-reported, subjectively defined healt h state and 4 preselected hypothetical health states. Results.-Adolesc ents who were ELBW infants reported a higher number of attributes affe cted, as well as more complex and severe limitations in cognition, sen sation, self-care, and pain, compared with controls, Statistically sig nificant differences for the teenagers' health-related quality of life were noted between ELBW and control teenagers in the mean utility sco res (0.87+/-0.26 vs 0.93+/-0.11; P=.02 on a conventional scale where 0 =dead and 1.00=perfect health), However, a similar percentage of ELBW and control teenagers (71% vs 73%) gave utility ratings of more than 0 .95 for their health status. Conclusions.-Direct measures of self-repo rted health status and utility scores indicated that, as a cohort, ado lescents who were ELBW infants suffer from a greater burden of morbidi ty and rate their health-related quality of life as significantly lowe r than control teenagers, Nevertheless, the vast majority of ELBW resp ondents view their health-related quality of life as quite satisfactor y and are difficult to distinguish from controls.