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Pediatrics. 2000 Mar;105(3 Pt 1):569-74.

Parental perspectives of the health status and health-related quality of life of teen-aged children who were extremely low birth weight and term controls.

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  • 1Department of Pediatrics, and the Centre for Health Economics and Policy Analysis, McMaster University, Hamilton, Ontario, Canada.

Abstract

OBJECTIVES:

To compare the health status and health-related quality of life of teen-aged children who were extremely low birth weight (ELBW) with matched controls from the perspective of their parents.

STUDY DESIGN:

Geographically defined cohort; longitudinal follow-up; cross-sectional interviews.

PARTICIPANTS:

parents of 149/169 (88%) ELBW children between 12 and 16 years of age (including 41 children with neurosensory impairments) and 126/145 (87%) parents of term controls. Health status of the teenagers was classified according to the 6 attributes of the Health Utilities Index Mark 2, based on information obtained during parent interviews. Parents were asked to imagine themselves living in their own child's health state and 4 preselected hypothetical health states when providing directly measured standard gamble utility scores.

RESULTS:

Parents of ELBW children reported a higher frequency and more complex functional limitations than parents of controls for their own children's health status. Also, the mean utilities were lower (ELBW =.91 vs controls =. 97) and the variability in their scores was greater. There were no differences in the valuation of the hypothetical health states provided by parents of ELBW and control children.

CONCLUSIONS:

ELBW children were reported to have a greater burden of disability than were control children based on parental descriptions. Nonetheless, parents of ELBW children, on average, rated the health-related quality of life of their children fairly high. Thus, differences in reported functional status are not necessarily associated with lower utility scores.

PMID:
10699111
[PubMed - indexed for MEDLINE]
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