Quality of Life at a 10-Year Follow-Up of Children Born Preterm with Post-Hemorrhagic Ventricular Dilatation: A Cohort Study

Ayeesha Rela, Sally Jary, Cathy Williams, Pete Blair, William Hollingworth, Ian Pople, Andrew Whitelaw, Karen Luyt, David Edward Odd

Research output: Contribution to journalArticle (Academic Journal)peer-review


BACKGROUND: Post-haemorrhagic ventricular dilatation (PHVD) is commonly seen in extremely preterm babies, carries significant morbidity, and may cause neonatal mortality. There is a lack of literature on the subsequent health-related quality of life (HRQoL) in childhood. The aim of this work was to assess the quality of life of preterm babies after PHVD at 10 years of age using two validated questionnaires.

METHODS: Children with PHVD were assessed as part of the 10-year follow-up of the drainage, irrigation, and fibrinolytic therapy trial. The HRQoL outcome was measured using parent-reported EQ-5D-5L and HUI-3 questionnaires. Both questionnaires produce a summary score anchored at 1 (best health) and 0 (equivalent to death).

RESULTS: Median scores at follow-up were 0.65 (IQR 0.36-0.84; n = 44) for the EQ-5D-5L and 0.52 (IQR 0.22-0.87; n = 51) for the HUI-3. Similar proportions had a score below 0.2 (HRQoL [20%], HUI-3 [21%]), while 20% had a HRQoL score above 0.80 compared to 34% using HUI-3. The most severe problems from the EQ-5D-5L were reported in the self-care, mobility, and activity domains, while the HUI-3 reported worse problems in ambulation, cognition, and dexterity domains. Infants with worse (grade 4) intraventricular haemorrhage had poorer HRQoL than those with grade 3 bleeds.

CONCLUSION: Children who survive to 10 years of age after PHVD have on average lower HRQoL than their peers. However, the reported range is wide, with a quarter of the children having scores above 0.87 (similar to population norms), while a fifth have very low HRQol scores. Impact was not uniform across domains, with mobility/ambulation a concern across both measures.

Original languageEnglish
Pages (from-to)690-698
Number of pages9
Issue number6
Early online date7 Sept 2023
Publication statusPublished - 1 Nov 2023

Bibliographical note

Funding Information:
The original DRIFT study was funded by the James and Grace Anderson Trust and by Cerebra. The school-age follow-up study was funded by the National Institute of Health Research, Health Technology Assessment Programme (HTA 12/35/61). This manuscript presents independent research funded by the National Institute for Health Research (NIHR). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health. The funding sources had no role in the design and conduct of the study; collection,

Publisher Copyright:
© 2023 S. Karger AG. All rights reserved.


  • Infant, Newborn
  • Infant
  • Child
  • Humans
  • Cohort Studies
  • Quality of Life
  • Follow-Up Studies
  • Dilatation
  • Cerebral Hemorrhage
  • Surveys and Questionnaires
  • Infant, Extremely Premature


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