Comparison of the health-related quality of life of extremely low birth weight children and a reference group of children at age eight years

doi:10.1016/S0022-3476(05)83289-5

The Journal of Pediatrics

Volume 125, Issue 3, September 1994, Pages 418-425

https://doi.org/10.1016/S0022-3476(05)83289-5 Get rights and content

Objectives:

To estimate and compare the health-related quality of life (HRQOL) of extremely low birth weight (ELBW) children and a reference group of children at age 8 years.

Design:

The study utilized a utility equation from preference measures derived from a random sample of 194 general-population parents surveyed in 1987. This equation was applied to multiattribute health state descriptions of the study participants. Utilities can be used to estimate a single cardinal value between 0.0 and 1.0 (0=dead; 1=perfect health) to reflect the global HRQOL for that individual.

Setting:

Geographically defined region in central-west Ontario, Canada.

Participants:

One hundred fifty-six ELBW survivors born between 1977 and 1982, and 145 reference children from the general population, matched for age, sex, and socioeconomic status to the index cases.

Results:

Mean HRQOL scores were lower for ELBW (0.82, SD 0.21) than for reference group (0.95, SD 0.07; p<0.0001). The ELBW group had greater variability in HRQOL scores (p<0.001), and the distribution was such that 50% of ELBW children but only 10% of the reference group had scores <0.88. Only 14% of ELBW children were assigned HRQOL scores of 1.0, compared with 50% of reference subjects (p<0.0001).

Conclusions:

These results demonstrate that from the perspective of the general population, the overall long-term burden experienced by ELBW children is greater than that for reference children. The methods used to assess HRQOL have wide applicability for evaluation of different treatment programs.

References (34)

TorranceGW
Utility approach to measuring health-related quality of life
J Chronic Dis
(1987)
TorranceGW
Measurement of health state utilities for economic appraisal. A review
J Health Econ
(1986)
CadmanD et al.
Construction of social value or utility-based health indices: the usefulness of factorial experimental design plants
J Chron Dis
(1986)
SaigalS et al.
Comprehensive assessment of the health status of extremely low birth weight children at eight years of age: comparison with a reference group
J Pediatr
(1994)
FrobergDG et al.
Methodology for measuring health state preferences. I. Measurement strategies
J Clin Epidemiol
(1989)
FrobergDG et al.
Methodology for measuring health state preferences. II. Scaling methods
J Clin Epidemiol
(1989)
FrobergDG et al.
Methodology for measuring health state preferences. III. Population and context effects
J Clin Epidemiol
(1989)
FrobergDG et al.
Methodology for measuring health state preferences. IV. Progress and research agenda
J Clin Epidemiol
(1989)
SaigalS et al.
Cognitive abilities and school performance of extremely low birth weight children and matched term control children at age 8 years: a regional study
J Pediatr
(1991)
SaigalS et al.
Decreased disability rate among 3-year-old survivors weighing 501 to 1000 grams at birth and born to residents of a geographically defined region from 1981 to 1984 compared with 1977 to 1980
J Pediatr
(1989)

WhyteHE et al.

Extreme immaturity: outcome of 568 pregnancies of 23–26 weeks' gestation

Obstet Gynecol

(1993)

AllenMC et al.

The limit of viability—neonatal outcome of infants born at 22 to 25 weeks' gestation

N Engl J Med

(1993)

Statement of the Fetus and Newborn Committee of the Canadian Pediatric Society and the Maternal-Fetal Medicine...

TorranceGW et al.

Application of multi-attribute utility theory to measure social preferences for health states

Operations Research

(1982)

FeenyD et al.

Incorporating utility-based quality-of-life assessments in clinical trials: Two examples

Med Care

(1989)

CadmanD et al.

Development of a health status index for Ontario children. Final report to the Ontario Ministry of Health on research grant DM 648 (00633)

(1986)

CadmanD et al.

Values, preferences and decisions in the care of children with developmental disabilities

J Dev Behav Pediatr

(1984)

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^†: Supported by grant No. XG 92-043, Hospital for Sick Children Foundation, Toronto, Ontario, Canada.

^††: Presented at the Society for Pediatric Research, Washington, D.C., May 1993; the Canadian Pediatric Society, Vancouver, British Columbia, Canada, June 1993; the American Academy of Cerebral Palsy and Developmental Medicine, Nashville, Tenn., October 1993; and the International Society for Health-Related Quality of Life, Brussels, Belgium, February 1994.

View full text

Comparison of the health-related quality of life of extremely low birth weight children and a reference group of children at age eight years†,††

Objectives:

Design:

Setting:

Participants:

Results:

Conclusions:

J Chronic Dis

J Health Econ

J Chron Dis

J Pediatr

J Clin Epidemiol

J Clin Epidemiol

J Clin Epidemiol

J Clin Epidemiol

J Pediatr

J Pediatr

Extreme immaturity: outcome of 568 pregnancies of 23–26 weeks' gestation

Obstet Gynecol

The limit of viability—neonatal outcome of infants born at 22 to 25 weeks' gestation

N Engl J Med

Application of multi-attribute utility theory to measure social preferences for health states

Operations Research

Incorporating utility-based quality-of-life assessments in clinical trials: Two examples

Med Care

Development of a health status index for Ontario children. Final report to the Ontario Ministry of Health on research grant DM 648 (00633)

Values, preferences and decisions in the care of children with developmental disabilities

J Dev Behav Pediatr