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

Saroj Saigal, MD, FRCPC; David Feeny, PhD; Peter Rosenbaum, MD, FRCPC; William Furlong, BSc; Elizabeth Burrows, MBA; Barbara Stoskopf, RN, MHSc
JAMA. 1996;276(6):453-459. doi:10.1001/jama.1996.03540060029031.
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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%) of 169 ELBW survivors born between 1977 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 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 participant's 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±0.111; 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-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.


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