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Changes over time in quality of life of school-aged children born extremely preterm: 1991–2005
  1. Stacey Peart1,
  2. Jeanie Ling Yoong Cheong1,2,3,
  3. Gehan Roberts4,5,
  4. Noni Davis1,
  5. Peter J Anderson2,6,
  6. Lex W Doyle1,2,3,5
  7. for the Victorian Infant Collaborative Study Group
    1. 1 Neonatal Services, Royal Women's Hospital, Melbourne, Victoria, Australia
    2. 2 Clinical Sciences, Murdoch Children's Research Institute, Melbourne, Victoria, Australia
    3. 3 Obstetrics and Gynaecology, University of Melbourne, Parkville, Victoria, Australia
    4. 4 Centre for Community Child Health, The Royal Children's Hospital, Melbourne, Victoria, Australia
    5. 5 Paediatrics, University of Melbourne, Parkville, Victoria, Australia
    6. 6 Monash Institute of Cognitive and Clinical Neurosciences, Monash University, Melbourne, Victoria, Australia
    1. Correspondence to Professor Jeanie Ling Yoong Cheong, Royal Women's Hospital Newborn Research Centre, Parkville, Victoria, Australia; jeanie.cheong{at}thewomens.org.au

    Abstract

    Objective To compare health-related quality of life (HRQOL) at 8 years in children born extremely preterm (EP) with contemporaneous term-born controls over three epochs: 1991–92, 1997 and 2005.

    Design Prospective recruitment of geographic cohorts across three distinct eras. Utilities were calculated from the parent-completed Health Utilities Index (HUI), version 2 (1991–92 and 1997 cohorts) and version 3 (2005 cohort). Differences in utilities >0.05 are clinically important.

    Setting The state of Victoria, Australia.

    Patients 475 EP (<28 weeks’ gestation) and 570 term controls.

    Main outcome measures Utilities of children born EP compared with term controls within each era, and paired differences between an EP and matched controls compared across eras.

    Results Overall, 86% of survivors had utility data at 8 years of age; 475 EP and 570 controls. In all eras, parent-reported utilities were lower for children born EP compared with controls (difference in medians (95% CIs); 1991–92, −0.053 (–0.071 to –0.035); 1997, –0.053 (−0.072 to –0.034); 2005, –0.082 (−0.097 to –0.068)). Mean differences (MD) between EP children and matched controls within each era were lower in the 2005 cohort compared with both the 1991–92 cohort (MD −0.054, 95% CI −0.097 to –0.010) and the 1997 cohort (MD −0.053, 95% CI −0.097 to –0.009).

    Conclusion Children born EP in the postsurfactant era have clinically important reductions in parent-reported HRQOL compared with controls, which may be worsening over time.

    • neonatology
    • statistics

    Data availability statement

    All data relevant to the study are included in the article or uploaded as supplementary information. Deidentified individual participant data will not be made available.

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    Data availability statement

    All data relevant to the study are included in the article or uploaded as supplementary information. Deidentified individual participant data will not be made available.

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    Footnotes

    • Collaborators The Victorian Infant Collaborative Study Group: Jeanie Cheong (Neonatal Services, Royal Women’s Hospital, Melbourne, Australia; Victorian Infant Brain Studies, Murdoch Children’s Research Institute, Melbourne, Australia; Department of Obstetrics & Gynaecology, University of Melbourne, Melbourne, Australia; Premature Infant Follow Up Program, Royal Women’s Hospital, Melbourne, Australia), Collaborators (in alphabetical order): Peter Anderson (Victorian Infant Brain Studies, Murdoch Children’s Research Institute, Melbourne, Australia; Department of Obstetrics & Gynaecology, University of Melbourne, Melbourne, Australia; Premature Infant Follow Up Program, Royal Women’s Hospital, Melbourne, Australia), Merilyn Bear (Victorian Infant Brain Studies, Murdoch Children’s Research Institute, Melbourne, Australia; Premature Infant Follow Up Program, Royal Women’s Hospital, Melbourne, Australia), Rosemarie Boland (Victorian Infant Brain Studies, Murdoch Children’s Research Institute, Melbourne, Australia; Department of Obstetrics & Gynaecology, University of Melbourne, Melbourne, Australia), Alice Burnett(Victorian Infant Brain Studies, Murdoch Children’s Research Institute, Melbourne, Australia; Department of Obstetrics & Gynaecology, University of Melbourne, Melbourne, Australia; Department of Paediatrics, University of Melbourne, Melbourne, Australia; Department of Neonatal Medicine, Royal Children’s Hospital, Melbourne, Australia), Margaret Charlton (Department of Neonatology, Monash Medical Centre, Melbourne, Australia), Marissa Clark (Premature Infant Follow Up Program, Royal Women’s Hospital, Melbourne, Australia), Janet Courtot (Department of Neonatology, Monash Medical Centre, Melbourne, Australia), Noni Davis (Premature Infant Follow Up Program, Royal Women’s Hospital, Melbourne, Australia), Lex Doyle (Neonatal Services, Royal Women’s Hospital, Melbourne, Australia; Victorian Infant Brain Studies, Murdoch Children’s Research Institute, Melbourne, Australia; Department of Obstetrics & Gynaecology, University of Melbourne, Melbourne, Australia; Premature Infant Follow Up Program, Royal Women’s Hospital, Melbourne, Australia; Department of Paediatrics, University of Melbourne, Melbourne, Australia), Julianne Duff (Premature Infant Follow Up Program, Royal Women’s Hospital, Melbourne, Australia), Rachel Ellis (Victorian Infant Brain Studies, Murdoch Children’s Research Institute, Melbourne, Australia; Premature Infant Follow Up Program, Royal Women’s Hospital, Melbourne, Australia), Anjali Haikerwal (Premature Infant Follow Up Program, Royal Women’s Hospital, Melbourne, Australia), Leah Hickey (Department of Paediatrics, University of Melbourne, Melbourne, Australia; Department of Neonatal Medicine, Royal Children’s Hospital, Melbourne, Australia), Marie Hayes (Department of Neonatology, Monash Medical Centre, Melbourne, Australia), Elisha Josev (Neonatal Services, Mercy Hospital for Women, Melbourne, Australia), Elaine Kelly (Premature Infant Follow Up Program, Royal Women’s Hospital, Melbourne, Australia; Neonatal Services, Mercy Hospital for Women, Melbourne, Australia), Katherine Lee (Clinical Epidemiology and Biostatistics, Murdoch Children’s Research Institute, Melbourne, Australia), Marion McDonald (Premature Infant Follow Up Program, Royal Women’s Hospital, Melbourne, Australia), Emma McInnes (Victorian Infant Brain Studies, Murdoch Children’s Research Institute, Melbourne, Australia; Premature Infant Follow Up Program, Royal Women’s Hospital, Melbourne, Australia), Bronwyn Novella (Neonatal Services, Mercy Hospital for Women, Melbourne, Australia), Joy Olsen (Victorian Infant Brain Studies, Murdoch Children’s Research Institute, Melbourne, Australia; Premature Infant Follow Up Program, Royal Women’s Hospital, Melbourne, Australia), Gillian Opie (Department of Obstetrics & Gynaecology, University of Melbourne, Melbourne, Australia; Neonatal Services, Mercy Hospital for Women, Melbourne, Australia), Gehan Roberts (Victorian Infant Brain Studies, Murdoch Children’s Research Institute, Melbourne, Australia; Department of Paediatrics, University of Melbourne, Melbourne, Australia; Population Health, Murdoch Children’s Research Institute, Melbourne, Australia), Katherine Scott (Neonatal Services, Mercy Hospital for Women, Melbourne, Australia), Alicia Spittle (Neonatal Services, Royal Women’s Hospital, Melbourne, Australia; Victorian Infant Brain Studies, Murdoch Children’s Research Institute, Melbourne, Australia; Department of Physiotherapy, University of Melbourne, Melbourne, Australia), Penelope Stevens (Department of Neonatology, Monash Medical Centre, Melbourne, Australia), Anne-Marie Turner (Neonatal Services, Mercy Hospital for Women, Melbourne, Australia).

    • Contributors SP interpreted the data, and drafted and revised the article. JLYC and LWD conceived and designed the study, analysed and interpreted the data and revised the article. PJA conceived and designed the study, and revised the article. GR and ND were involved in data collection and revised the article.

    • Funding Supported by grants from the National Health and Medical Research Council of Australia (Centre of Clinical Research Excellence #546519; Centres of Research Excellence #1060733 and #1153176; Project Grant #108702, Leadership Fellowship #1176077 to PJA), Medical Research Future Fund (Career Development Fellowship #1141354 to JC) and the Victorian Government’s Operational Infrastructure Support Program.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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