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  • Health-related quality of life in adults born extremely preterm or with extremely low birth weight in the postsurfactant era: a longitudinal cohort study

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Original research
Health-related quality of life in adults born extremely preterm or with extremely low birth weight in the postsurfactant era: a longitudinal cohort study
  1. Christopher Selman1,
  2. Rheanna Mainzer1,
  3. Katherine Lee1,2,
  4. Peter Anderson3,4,
  5. Alice Burnett2,3,5,
  6. Suzanne M Garland6,7,8,
  7. George C Patton2,9,
  8. Lauren Pigdon3,10,
  9. Gehan Roberts2,11,12,
  10. John Wark13,14,
  11. Lex W Doyle2,3,5,6,
  12. Jeanie Ling Yoong Cheong3,6,10
  13. for the Victorian Infant Collaborative Study Group
    1. 1 Clinical Epidemiology and Biostatistics Unit, Murdoch Children's Research Institute, Parkville, Victoria, Australia
    2. 2 Department of Paediatrics, University of Melbourne, Parkville, Victoria, Australia
    3. 3 Clinical Sciences, Murdoch Children's Research Institute, Parkville, Victoria, Australia
    4. 4 School of Psychological Sciences, University of Melbourne, Parkville, Victoria, Australia
    5. 5 Premature Infant Follow-Up Program, Royal Women's Hospital, Melbourne, Victoria, Australia
    6. 6 Department of Obstetrics and Gynaecology, Royal Women's Hospital, Melbourne, Victoria, Australia
    7. 7 Women's Centre for Infectious Diseases, Royal Women's Hospital, Melbourne, Victoria, Australia
    8. 8 Infection and Immunity, Murdoch Children's Research Institute, Parkville, Victoria, Australia
    9. 9 Centre for Adolescent Health, Murdoch Children's Research Institute, Parkville, Victoria, Australia
    10. 10 Newborn Research, Royal Women's Hospital, Parkville, Victoria, Australia
    11. 11 Centre for Community Child Health, Royal Children's Hospital, Parkville, Victoria, Australia
    12. 12 Population Health, Murdoch Children's Research Institute, Parkville, Victoria, Australia
    13. 13 Department of Medicine Royal Melbourne Hospital, The University of Melbourne, Parkville, Victoria, Australia
    14. 14 Bone and Mineral Medicine, Department of Diabetes and Endocrinology, Royal Melbourne Hospital, Melbourne, Victoria, Australia
    1. Correspondence to Mr Christopher Selman, Murdoch Children's Research Institute, Parkville, Victoria, Australia; chris.selman{at}mcri.edu.au

    Abstract

    Objectives To compare health-related quality of life (HRQoL) at 25 and 18 years in individuals born extremely preterm (EP, <28 weeks’ gestation) or with extremely low birth weight (ELBW, birth weight <1000 g) with term-born (≥37 weeks) controls. Within the EP/ELBW cohort, to determine whether HRQoL differed between those with lower and higher IQs.

    Methods HRQoL was self-reported using the Health Utilities Index Mark 3 (HUI3) at 18 and 25 years by 297 EP/ELBW and 251 controls born in 1991–1992 in Victoria, Australia. Median differences (MDs) between groups were estimated using multiple imputation to handle missing data.

    Results Adults born EP/ELBW had lower HRQoL (median utility 0.89) at 25 years than controls (median utility 0.93, MD −0.040), but with substantial uncertainty in the estimate (95% CI −0.088 to 0.008) and a smaller reduction at 18 years (MD −0.016, 95% CI –0.061 to 0.029). On individual HUI3 items, there was suboptimal performance on speech (OR 9.28, 95% CI 3.09 to 27.93) and dexterity (OR 5.44, 95% CI 1.04 to 28.45) in the EP/ELBW cohort. Within the EP/ELBW cohort, individuals with lower IQ had lower HRQoL compared with those with higher IQ at 25 (MD −0.031, 95% CI −0.126 to 0.064) and 18 years (MD −0.034, 95% CI −0.107 to 0.040), but again with substantial uncertainty in the estimates.

    Conclusions Compared with term-born controls, young adults born EP/ELBW reported poorer HRQoL, as did those with lower IQ compared with those with higher IQ in the EP/ELBW cohort. Given the uncertainties, our findings need corroboration.

    • Statistics
    • Child Health
    • Neonatology

    Data availability statement

    Data are available upon reasonable request.

    https://doi.org/10.1136/archdischild-2022-325230

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      Data availability statement

      Data are available upon reasonable request.

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      Footnotes

      • Deceased George Patton passed away in 2022.

      • Collaborators We thank the study participants and families for their involvement in this study. Members of the Victorian Infant Collaborative Study Group: Convenor: Jeanie Cheong (Neonatal Services, Royal Women’s Hospital, Melbourne, Australia; Clinical Sciences, 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): Niranjan Abraham (Newborn Services, Joan Kirner Women’s and Children’s Hospital, Melbourne, Australia), Peter Anderson (Clinical Sciences, Murdoch Children’s Research Institute, Melbourne, Australia; Premature Infant Follow Up Program, Royal Women’s Hospital, Melbourne, Australia; Turner Institute for Brain and Mental Health, Monash University, Melbourne, Australia), Merilyn Bear (Clinical Sciences, Murdoch Children’s Research Institute, Melbourne, Australia; Premature Infant Follow Up Program, Royal Women’s Hospital, Melbourne, Australia), Rosemarie Boland (Clinical Sciences, Murdoch Children’s Research Institute, Melbourne, Australia; Department of Obstetrics & Gynaecology, University of Melbourne, Melbourne, Australia), Alice Burnett (Clinical Sciences, Murdoch Children’s Research Institute, Melbourne, Australia; Premature Infant Follow Up Program, Royal Women’s Hospital, 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 (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; Clinical Sciences, 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), Leah Hickey (Clinical Sciences, Murdoch Children’s Research Institute, Melbourne, Australia; Department of Paediatrics, University of Melbourne, Melbourne, Australia; Department of Neonatal Medicine, Royal Children’s Hospital, Melbourne, Australia), Emily Johnston (Department of Neonatology, Monash Medical Centre, Melbourne, Australia), Elisha Josev (Clinical Sciences, Murdoch Children’s Research Institute, Melbourne, Australia; Department of Paediatrics, University of Melbourne, Melbourne, Australia; Neonatal Services, Mercy Hospital for Women, Melbourne, Australia), Katherine Lee (Department of Paediatrics, University of Melbourne, Melbourne, Australia; Clinical Epidemiology and Biostatistics, Murdoch Children’s Research Institute, Melbourne, Australia), Marion McDonald (Premature Infant Follow Up Program, Royal Women’s Hospital, Melbourne, Australia), Rheanna Mainzer (Clinical Epidemiology and Biostatistics, Murdoch Children’s Research Institute, Melbourne, Australia), Bronwyn Novella (Neonatal Services, Mercy Hospital for Women, Melbourne, Australia), Joy Olsen (Clinical Sciences, 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), Lauren Pigdon (Clinical Sciences, Murdoch Children’s Research Institute, Melbourne, Australia; Premature Infant Follow Up Program, Royal Women’s Hospital, Melbourne, Australia), Gehan Roberts (Clinical Sciences, Murdoch Children’s Research Institute, Melbourne, Australia; Premature Infant Follow Up Program, Royal Women’s Hospital, Melbourne, Australia; Department of Paediatrics, University of Melbourne, Melbourne, Australia; Centre for Community and Child Health, Royal Children’s Hospital, 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; Clinical Sciences, 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), Alice Stewart (Department of Neonatology, Monash Medical Centre, Melbourne, Australia), Anne-Marie Turner (Neonatal Services, Mercy Hospital for Women, Melbourne, Australia).

      • Contributors JC, RM, LW, PA, AB, SG, GP, LP, GR, JW and KL conceived the study. CS wrote the first draft of the manuscript. JC, SG and JW acquired funding. JC was also involved with methodology, data curation, investigation, supervision/oversight and resources. RM, KL and LW were also involved with methodology, data curation, investigation, formal analysis and supervision/oversight. GP, PA, JW, AB, SG, LP and GR provided supervision/oversight. JC is response for the overall content as the guarantor.

      • Funding The study was supported by grants from the National Health and Medical Research Council of Australia (Centre of Clinical Research Excellence #546519; Centre of Research Excellence #1060733 and #1153176; project grant #108702; Career Development Fellowship #1127984 to KL; investigator grant #1176077 to PJA), the Medical Research Future Fund of Australia (Career Development Fellowship #1141354 to JC) and the Victorian Government’s Operational Infrastructure Support Program. The Murdoch Children's Research Institute is supported by the Victorian Government's Operational Infrastructure Support Program.

      • Disclaimer The funders had no role in the design and conduct of the study; collection, management, analysis and interpretation of the data; preparation, review or approval of the manuscript; and decision to submit the manuscript for publication.

      • 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.