title: Self and parent perspectives on health-related quality of life of adolescents born very preterm.
abstract: OBJECTIVE
  To test whether health-related quality of life (HRQL) based on societal standards differs between very low birth weight/very preterm (VLBW/VP) and full-term (FT) adolescents using self and parent proxy reports. Also, to examine whether self and parent reported HRQL is explained by indicators of objective functioning in childhood.
  
  
  METHODS
  This prospective cohort study followed 260 VLBW/VP adolescents, 12 VLBW/VP adolescents with disability, and 282 FT adolescents. Objective functioning was assessed at 8.5 years; HRQL was assessed at 13 years with the Health Utilities Index Mark 3 (HUI3).
  
  
  RESULTS
  Adolescents reported more functional impairment than their parents especially in the psychological aspects of health. The mean difference in HUI3 multi-attribute utility scores between FT and VLBW/VP adolescents was small (parents: 0.91 [95% CI, 0.90, 0.92] vs 0.88 [95% CI, 0.86, 0.90]; adolescents: 0.87 [95% CI, 0.85, 0.89] vs 0.84 [95% CI, 0.82, 0.86]), but high for VLBW/VP adolescents with disabilities (0.18, 95% CI, -0.04, 0.40). Objective function did not predict HRQL in FT adolescents but contributed to prediction of HRQL in VLBW/VP adolescents without disabilities. Different indicators of objective functioning were important for adolescent vs parent reports. More variation in HUI3 scores was explained by objective function in VLBW/VP parent reports compared with adolescent reports (25% vs 18%).
  
  
  CONCLUSIONS
  VLBW/VP adolescents reported poorer HRQL than their FT peers in early adolescence. Improvement in HRQL as VLBW/VP children grow up is, at least partly, explained by exclusion of the most disabled in self reports by VLBW/VP adolescents and the use of different reference points by adolescents compared with parents.
authors.affiliation: Department of Psychology, University of Warwick, Coventry, United Kingdom; Warwick Medical School, University of Warwick, Coventry, United Kingdom. Electronic address: D.Wolke@warwick.ac.uk.
authors.forename: Dieter
authors.initials: D
authors.lastname: Wolke
authors.forename: Julia
authors.initials: J
authors.lastname: Chernova
authors.forename: Suna
authors.initials: S
authors.lastname: Eryigit-Madzwamuse
authors.forename: Muthanna
authors.initials: M
authors.lastname: Samara
authors.forename: Karolina
authors.initials: K
authors.lastname: Zwierzynska
authors.forename: Stavros
authors.initials: S
authors.lastname: Petrou
mesh_terms: D000293:Adolescent; D002648:Child; D015331:Cohort Studies; D006233:Persons with Disabilities; D005260:Female; D005865:Gestational Age; D006304:Health Status; D006801:Humans; D007234:Infant, Premature / Q000523:psychology*; D019102:Infant, Very Low Birth Weight / Q000523:psychology*; D008297:Male; D010290:Parents / Q000523:psychology*; D010465:Perception; D015995:Prevalence; D011446:Prospective Studies; D011788:Quality of Life; D057566:Self Report; D011795:Surveys and Questionnaires
keywords: FT; Full-term; HRQL; HUI3; Health Utilities Index Mark 3; Health-related quality of life; MAU; Multi-attribute utility; SES; Socioeconomic status; VLBW; VP; Very low birth weight; Very preterm