PEDIATRICS Vol. 105 No. 3 March 2000, pp. 569-574
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
Received Dec 21, 1998; accepted Jun 29, 1999.
,,
From the Departments of * Pediatrics and Clinical
Epidemiology and Biostatistics, and the Centre for Health Economics and
Policy Analysis, McMaster University, § Children's Hospital at
Hamilton Health Sciences Corporation, Hamilton, Ontario, Canada.
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. Key words: health status, quality of life, adolescence, extremely low birth weight, parental.
This article has been cited by other articles:
 |
|
 |
|
  Petrou and McIntosh Measuring the benefits of growth hormone therapy in children: a role for preference-based approaches? Arch. Dis. Child., February 1, 2008; 93(2): 95 - 97. [Full Text] [PDF]
|
|
|
|
 |
|
 J. G. Zwicker and S. R. Harris Quality of Life of Formerly Preterm and Very Low Birth Weight Infants From Preschool Age to Adulthood: A Systematic Review Pediatrics, February 1, 2008; 121(2): e366 - e376. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
R. Gray, S. Petrou, C. Hockley, and F. Gardner Self-Reported Health Status and Health-Related Quality of Life of Teenagers Who Were Born Before 29 Weeks' Gestational Age Pediatrics, July 1, 2007; 120(1): e86 - e93. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
A. Craft Differing views on quality of life Arch. Dis. Child., May 1, 2007; 92(5): 378 - 378. [Full Text] [PDF]
|
|
|
|
|
|
R. L Knowles, I. Griebsch, C. Bull, J. Brown, C. Wren, and C. Dezateux Quality of life and congenital heart defects: comparing parent and professional values Arch. Dis. Child., May 1, 2007; 92(5): 388 - 393. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 D. Sherifali and J. Pinelli Parent as Proxy Reporting: Implications and Recommendations for Quality of Life Research Journal of Family Nursing, February 1, 2007; 13(1): 83 - 98. [Abstract] [PDF]
|
|
|
|
|
|
S. Saigal, B. Stoskopf, J. Pinelli, D. Streiner, L. Hoult, N. Paneth, and J. Goddeeris Self-Perceived Health-Related Quality of Life of Former Extremely Low Birth Weight Infants at Young Adulthood Pediatrics, September 1, 2006; 118(3): 1140 - 1148. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
R. E. Grunau, M. F. Whitfield, and T. B. Fay Psychosocial and Academic Characteristics of Extremely Low Birth Weight (<=800 g) Adolescents Who Are Free of Major Impairment Compared With Term-Born Control Subjects Pediatrics, December 1, 2004; 114(6): e725 - e732. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 CRYO-ROP Cooperative Group Health-Related Quality of Life at Age 10 Years in Very Low-Birth-Weight Children With and Without Threshold Retinopathy of Prematurity Arch Ophthalmol, November 1, 2004; 122(11): 1659 - 1666. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
Follow-up Care of High-Risk Infants Pediatrics, November 1, 2004; 114(5/S1): 1377 - 1397. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
A. F. Klassen, S. K. Lee, P. Raina, H. W.P. Chan, D. Matthew, and D. Brabyn Health Status and Health-Related Quality of Life in a Population-Based Sample of Neonatal Intensive Care Unit Graduates Pediatrics, March 1, 2004; 113(3): 594 - 600. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 S. Saigal, B. L. Stoskopf, E. Burrows, D. L. Streiner, and P. L. Rosenbaum Stability of Maternal Preferences for Pediatric Health States in the Perinatal Period and 1 Year Later Arch Pediatr Adolesc Med, March 1, 2003; 157(3): 261 - 269. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 V Tommiska, M Ostberg, and V Fellman Parental stress in families of 2 year old extremely low birthweight infants Arch. Dis. Child. Fetal Neonatal Ed., May 1, 2002; 86(3): F161 - F164. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 M. O'Shea Changing Characteristics of Neonatal Follow-up Studies NeoReviews, November 1, 2001; 2(11): e249 - 256. [Full Text] [PDF]
|
|
|
|
|
|
H. G. Taylor, N. Klein, N. M. Minich, and M. Hack Long-term Family Outcomes for Children With Very Low Birth Weights Arch Pediatr Adolesc Med, February 1, 2001; 155(2): 155 - 161. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 Other articles noted Evid. Based Nurs., October 1, 2000; 3(4): 106 - 112. [Full Text]
|
|
