{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,3]],"date-time":"2026-10-03T16:43:54Z","timestamp":1791045834273,"version":"4.1.0"},"reference-count":36,"publisher":"American Academy of Pediatrics (AAP)","issue":"3","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2000,3,1]]},"abstract":"<jats:sec><jats:title>Objectives.<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Study Design.<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results.<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions.<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec>","DOI":"10.1542\/peds.105.3.569","type":"journal-article","created":{"date-parts":[[2004,8,13]],"date-time":"2004-08-13T23:50:41Z","timestamp":1092441041000},"page":"569-574","source":"Crossref","is-referenced-by-count":119,"title":["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"],"prefix":"10.1542","volume":"105","author":[{"given":"Saroj","family":"Saigal","sequence":"first","affiliation":[{"name":"From the Departments of Pediatrics and"},{"name":"Children's Hospital at Hamilton Health Sciences Corporation, Hamilton, Ontario, Canada."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Peter L.","family":"Rosenbaum","sequence":"additional","affiliation":[{"name":"From the Departments of Pediatrics and"},{"name":"Children's Hospital at Hamilton Health Sciences Corporation, Hamilton, Ontario, Canada."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Feeny","sequence":"additional","affiliation":[{"name":"Clinical Epidemiology and Biostatistics, and the Centre for Health Economics and Policy Analysis, McMaster University,"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elizabeth","family":"Burrows","sequence":"additional","affiliation":[{"name":"From the Departments of Pediatrics and"},{"name":"Children's Hospital at Hamilton Health Sciences Corporation, Hamilton, Ontario, Canada."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"William","family":"Furlong","sequence":"additional","affiliation":[{"name":"Clinical Epidemiology and Biostatistics, and the Centre for Health Economics and Policy Analysis, McMaster University,"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Barbara L.","family":"Stoskopf","sequence":"additional","affiliation":[{"name":"From the Departments of Pediatrics and"},{"name":"Children's Hospital at Hamilton Health Sciences Corporation, Hamilton, Ontario, Canada."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lorraine","family":"Hoult","sequence":"additional","affiliation":[{"name":"From the Departments of Pediatrics and"},{"name":"Children's Hospital at Hamilton Health Sciences Corporation, Hamilton, Ontario, Canada."}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"417","published-online":{"date-parts":[[2000,3,1]]},"reference":[{"key":"2021121003111395000_B1","doi-asserted-by":"crossref","first-page":"833","DOI":"10.1016\/S0002-9378(96)70309-5","article-title":"Neonatal survival and disability rate at age 18 months for infants born between 23 and 28 weeks of gestation.","volume":"174","author":"Lefebvre","year":"1996","journal-title":"Am J Obstet 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