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.
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.
Authors: Annie Janvier; Keith J Barrington; Khalid Aziz; Eduardo Bancalari; Daniel Batton; Carlo Bellieni; Brahim Bensouda; Carlos Blanco; Po-Yin Cheung; Felicia Cohn; Thierry Daboval; Peter Davis; Eugene Dempsey; Amélie Dupont-Thibodeau; Emanuela Ferretti; Barbara Farlow; Matteo Fontana; Etienne Fortin-Pellerin; Aviva Goldberg; Thor Willy Ruud Hansen; Marlyse Haward; Lajos Kovacs; Anie Lapointe; John Lantos; Colin Morley; Ahmed Moussa; Gabriel Musante; Sophie Nadeau; Colm Pf O'Donnell; Kristina Orfali; Antoine Payot; C Anthony Ryan; Guilherme Sant'anna; Ola D Saugstad; Sadath Sayeed; Theophil A Stokes; Eduard Verhagen Journal: Paediatr Child Health Date: 2014-01 Impact factor: 2.253
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Authors: Jochen Profit; Katri V Typpo; Sylvia J Hysong; LeChauncy D Woodard; Michael A Kallen; Laura A Petersen Journal: Implement Sci Date: 2010-02-09 Impact factor: 7.327