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Parent-reported health status of preterm survivors in a Canadian cohort
  1. Satvinder Ghotra1,
  2. David Feeny2,
  3. Ronald Barr3,
  4. Junmin Yang4,
  5. Saroj Saigal3,
  6. Michael Vincer1,
  7. Jehier Afifi1,
  8. Prakeshkumar S Shah4,
  9. Shoo K Lee4,
  10. Anne R Synnes5
  11. Canadian Neonatal Follow-Up Network Investigators
    1. 1 Pediatrics, Dalhousie University and IWK Health Centre, Halifax, Nova Scotia, Canada
    2. 2 Economics, McMaster University, Hamilton, Ontario, Canada
    3. 3 Pediatrics, Health Sciences Centre, McMaster University, Hamilton, Ontario, Canada
    4. 4 Pediatrics, Mount Sinai Hospital, Toronto, Ontario, Canada
    5. 5 Neonatology, BC Women's Hospital and Health Centre, Vancouver, British Columbia, Canada
    1. Correspondence to Dr Satvinder Ghotra, Pediatrics, IWK Health Centre, Halifax, NS B3K 6R8, Canada; satvinder.ghotra{at}iwk.nshealth.ca

    Abstract

    Objectives Health status (HS)/ health-related quality of life measures, completed by self or proxy, are important outcome indicators. Most HS literature on children born preterm includes adolescents and adults with limited data at preschool age. This study aimed to describe parent-reported HS in a large national cohort of extreme preterm children at preschool age and to identify clinical and sociodemographic variables associated with HS.

    Methods Infants born before 29 weeks’ gestation between 2009 and 2011 were enrolled in a prospective longitudinal national cohort study through the Canadian Neonatal Network (CNN) and the Canadian Neonatal Follow-Up Network (CNFUN). HS, at 36 months’ corrected age (CA), was measured with the Health Status Classification System for Pre-School Children tool completed by parents. Information about HS predictors was extracted from the CNN and CNFUN databases.

    Results Of 811 children included, there were 79, 309 and 423 participants in 23–24, 25–26 and 27–28 weeks’ gestational age groups, respectively. At 36 months’ CA, 78% had a parent-reported health concern, mild in >50% and severe in 7%. Most affected HS attributes were speech (52.1%) and self-care (41.4%). Independent predictors of HS included substance use during pregnancy, infant male sex, Score for Neonatal Acute Physiology-II, bronchopulmonary dysplasia, severe retinopathy of prematurity, caregiver employment and single caregiver.

    Conclusion Most parents expressed no or mild health concerns for their children at 36 months’ CA. Factors associated with health concerns included initial severity of illness, complications of prematurity and social factors.

    • neonatology
    • epidemiology

    Data availability statement

    All data relevant to the study are included in the article or uploaded as supplementary information. Data is available upon reasonable request from the Canadian Neonatal Follow-Up Network (https://cnfun.ca/).

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    Data availability statement

    All data relevant to the study are included in the article or uploaded as supplementary information. Data is available upon reasonable request from the Canadian Neonatal Follow-Up Network (https://cnfun.ca/).

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    Footnotes

    • Collaborators Canadian Neonatal Network (CNN) site investigators: Prakesh S Shah, MD, MSc (Director, CNN and site investigator), Mount Sinai Hospital, Toronto, Ontario; Marc Beltempo, MD (associate director, CNN and Site Investigator), Montreal Children’s Hospital at McGill University Health Centre, Montréal, Québec; Jennifer Toye, MD, Royal Alexandra Hospital, Edmonton, Alberta; Jaya Bodani, MD, Regina General Hospital, Regina, Saskatchewan; Mary Seshia, MBChB, and Deepak Louis, MD, Winnipeg Health Sciences Centre, Winnipeg, Manitoba; Ruben Alvaro, MD, St. Boniface General Hospital, Winnipeg, Manitoba; Orlando Da Silva, MD, MSc, London Health Sciences Centre (formerly St. Joseph Health Centre), London, Ontario; Keith Barrington, MBChB, Anie Lapoint, MD, and Guillaume Ethier, NNP, Hôpital Sainte-Justine, Montréal, Québec; Christine Drolet, MD, and Bruno Piedboeuf, MD, Centre Hospitalier Universitaire de Québec, Sainte Foy, Québec; Martine Claveau, MSc, LLM, NNP, and Marc Beltempo, MD, Montreal Children’s Hospital at McGill University Health Centre (formerly Montreal Children’s Hospital and Royal Victoria Hospital), Montréal, Québec; Cecil Ojah, MBBS, and Luis Monterrosa, MD, Saint John Regional Hospital, Saint John, New Brunswick; Shoo K Lee, MBBS, PhD (chairman, CNN), Mount Sinai Hospital, Toronto, Ontario. Canadian Neonatal Follow-up Network investigators and Steering Committee: Anne Synnes, MDCM, MHSC (director), Ruth Grunau PhD (steering committee) British Columbia Women’s Hospital, Vancouver, British Columbia; Jill Zwicker PhD (steering committee); Amber Reichert, MD, Matthew Hicks, MD, PhD, Glenrose Rehabilitation Hospital, Edmonton, Alberta; Jaya Bodani, MD, Regina General Hospital, Regina, Saskatchewan; Diane Moddemann, MD (steering committee), Cecilia de Cabo MD, Winnipeg Health Sciences Centre, St. Boniface General Hospital, Winnipeg, Manitoba; Kevin Coughlin, MD (steering committee), Lynn Whitty RN (steering committee), Children’s Hospital London Health Sciences Centre, London, Ontario; Edmond Kelly, MD, Mount Sinai Hospital, Toronto, Ontario; Rudaina Banihani MD (steering committee) Sunnybrook Health Sciences Centre, Toronto, Ontario; May Khairy, MD, Marc Beltempo, MD, Montréal Children’s Hospital, Royal Victoria Hospital, Montréal, Québec; Veronique Dorval MD, Thuy Mai Luu MD, MSc (codirector), Centre Hospitalier Universitaire Sainte-Justine, Montréal, Québec; Sylvie Bélanger, MD, Centre Hospitalier Universitaire de Québec, Québec City, Québec; Luis Monterrosa, MD, Saint John Regional Hospital, Saint John, New Brunswick.

    • Contributors SG conceptualised and designed the study, drafted the initial manuscript and approved the final manuscript as submitted. DF, RB and ARS helped in study design and interpretation of study findings, critically reviewed the manuscript and approved the final manuscript as submitted. ARS is the director of the Canadian Neonatal Follow-Up Network. JY helped in statistical analysis, critically reviewed the manuscript and approved the final manuscript as submitted. SS, MV, JA, PSS and SKL critically reviewed the manuscript, and approved the final manuscript as submitted. SS led the initiative for the original version of the Health Status Classification System for Pre-School Children; subsequent development was led by members of Health Utilities Inc, notably DF and WF.

    • 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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