Elsevier

The Journal of Pediatrics

Volume 163, Issue 4, October 2013, Pages 1020-1026.e2
The Journal of Pediatrics

Original Article
Self and Parent Perspectives on Health-Related Quality of Life of Adolescents Born Very Preterm

https://doi.org/10.1016/j.jpeds.2013.04.030Get rights and content

Objectives

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.

Study design

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.

Section snippets

Methods

The Bavarian Longitudinal Study has been described in detail elsewhere.8 All infants born alive in a geographically defined area in Southern Bavaria (Germany) during 1985 and 1986 and who required admission to children's hospitals within the first 10 days after birth comprised the target population. Ethical approval for this study was granted by the Ethical Review Board of the University of Munich Children's Hospital, and informed consent was obtained from the parents.

Out of 7505 children

Results

Compared with FT peers, VLBW/VP I and II adolescents were more often multiple births, small for gestational age, had moderate to severe disability, and lived in families with higher adversities (Table III). Relative to the VLBW/VP I subset, the VLBW/VP II subset had a lower mean birth weight (P = .052) and was more likely to be born to younger mothers (P = .016). In terms of objective functioning at 8.5 years of age, VLBW/VP I children performed significantly worse than their FT peers on

Discussion

This study explored health statuses and HRQL for VLBW/VP and FT adolescents in relation to early indicators of objective functioning and source of information (parent vs adolescent reported). We found differences between FT and VLBW/VP subsets independent of source of information (adolescent vs parent report). We also found that source of information matters for some aspects of health status but not others; objective function indicators at 8.5 years of age predict VLBW/VP adolescents' HRQL at

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    Supported by the German Federal Ministry of Education and Science (PKE24, JUG14, 01EP9504, and 01ER0801) and the 13-year assessment by the German Research Foundation (SCHN 315/15-1). The authors declare no conflicts of interest.

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