Published online September 1, 2006
PEDIATRICS Vol. 118 No. 3 September 2006, pp. 1140-1148 (doi:10.1542/peds.2006-0119)
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ARTICLE

Self-Perceived Health-Related Quality of Life of Former Extremely Low Birth Weight Infants at Young Adulthood

Saroj Saigal, MD, FRCP Ca, Barbara Stoskopf, RN, MHSca, Janet Pinelli, RNC, MScN, DNSa,b, David Streiner, PhDc, Lorraine Hoult, BAa, Nigel Paneth, MD, MPHd,e and John Goddeeris, PhDf

a Department of Pediatrics
b School of Nursing, McMaster University, Hamilton, Ontario, Canada
c Department of Psychiatry, University of Toronto, Toronto, Ontario, Canada
d Departments of Epidemiology
e Human Development
f Economics, Michigan State University, East Lansing, Michigan

OBJECTIVES. The goals were to compare the self-reported, health-related quality of life of former extremely low birth weight and normal birth weight infants at young adulthood and to determine whether there were any changes over time.

METHODS. A prospective, longitudinal, population-based study with concurrent control subjects was performed. We interviewed 143 of 166 extremely low birth weight survivors (birth weight: 501–1000 g; 1977–1982 births) and 130 of 145 sociodemographically comparable, normal birth weight, reference subjects. Neurosensory impairments were present for 27% extremely low birth weight and 2% normal birth weight young adults. Health Utilities Index 2 was used to assess health status, and standard gamble technique was used to measure directly the self-reported, health-related, quality of life and 4 hypothetical health states.

RESULTS. Extremely low birth weight young adults reported more functional limitations in cognition, sensation, mobility, and self-care, compared with control subjects. There were no differences between groups in the mean self-reported, health-related, quality of life or between impaired (n = 38) and nonimpaired (n = 105) extremely low birth weight subjects. However, with a conservative approach of assigning a score of 0 for 10 severely disabled, extremely low birth weight subjects, the mean health-related quality of life was significantly lower than control values. Repeated-measures analysis of variance to compare health-related quality-of-life measurements obtained for young adults and teens showed the same decline in scores over time for both groups. There were no differences between groups in the ratings provided for the hypothetical health states.

CONCLUSIONS. At young adulthood, health-related quality of life was not related to size at birth or to the presence of disability. There was a small decrease in health-related quality-of-life scores over time for both groups.

Key Words: quality of life • extremely low birth weight • young adulthood

Abbreviations: ELBW—extremely low birth weight • NBW—normal birth weight • HRQL—health-related quality of life • HUI—Health Utilities Index • NSI—neurosensory impairment • CI—confidence interval • CB—chance board • YA—young adult

Accepted Apr 19, 2006.


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