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Ni et al_HRQOL from adolescence to adulthood EPICure_JPeds 2021.pdf (651.34 kB)

Health-related quality of life from adolescence to adulthood following extremely preterm birth

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journal contribution
posted on 2021-05-06, 15:09 authored by Yanyan Ni, Helen O'Reilly, Samantha Johnson, Neil Marlow, Dieter Wolke
Objective
To examine self-reported and parent-reported health-related quality of life (HRQL) in adults born extremely preterm compared with control participants born at term and to evaluate trajectories of health status from adolescence to early adulthood.
Study design
The EPICure study comprises all births <26 weeks of gestation in the United Kingdom and Ireland in 1995 and control participants born at term recruited at age 6 years. In total, 129 participants born extremely preterm and 65 control participants were followed up at the 19-year assessment. HRQL was measured by the Health Utilities Index Mark 3 multiattribute utility (MAU) scores. Only parent-reported HRQL was available at 11 years of age.
Results
Participants born extremely preterm without neurodevelopmental impairment had significantly lower MAU scores at 19 years than controls (median [IQR]: 0.91 [0.79, 0.97] vs 0.97 [0.87, 1.00], P = .008); those with impairment had the lowest scores (0.74 [0.49, 0.90]). A 0.03-0.05 difference is considered clinically significant. Parent-reported findings were similar. Participants born extremely preterm with impairment rated their health significantly better than their parents did (0.74 vs 0.58, P = .01), in contrast to those without impairment and controls. Between 11 and 19 years, median parent-reported MAU scores decreased from 0.87 to 0.77 for participants born extremely preterm (P = .01) and from 1.00 to 0.97 for control participants (P = .02).
Conclusions
Among young adults born extremely preterm, both participants and parents rated their health status less favorably than control participants born at term. The decline in MAU scores from adolescence to early adulthood following extremely preterm birth indicates continuing health issues in young adult life.

Funding

Funded by the Medical Research Council UK (MRC Ref MR/J01107X/1). The analysis was supported by the European Commission Horizon 2020 Research and Innovation Program (733280 [to Y.N., S.J., and D.W.]) and the Norface Network Dial program (462-16-040 [to D.W.])

History

Author affiliation

Department of Health Sciences, University of Leicester

Version

  • AM (Accepted Manuscript)

Published in

Journal of Pediatrics

Publisher

Elsevier

issn

0022-3476

Copyright date

2021

Available date

2022-04-07

Language

en

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