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Parent-reported health outcomes at preschool age in preterm survivors: a population-based cohort study
  1. Sydney MacDonald1,
  2. Alexandra Stratas2,
  3. Anne R Synnes3,
  4. Navjot Sandila4,
  5. Marsha Campbell-Yeo1,2,
  6. Prakesh S Shah5,
  7. Satvinder Ghotra1,2
  1. 1 Dalhousie University, Halifax, Nova Scotia, Canada
  2. 2 IWK Health Centre, Halifax, Nova Scotia, Canada
  3. 3 Neonatology, BC Women's Hospital and Health Centre, Vancouver, British Columbia, Canada
  4. 4 Nova Scotia Health Authority, Halifax, Nova Scotia, Canada
  5. 5 Mount Sinai Hospital, Toronto, Ontario, Canada
  1. Correspondence to Dr Satvinder Ghotra; satvinder.ghotra{at}


Objective Literature on health status (HS) and health-related quality of life of preterm survivors at preschool age is sparse. Further, little is known about the relationship between parent-reported HS outcomes and standardised neurodevelopmental outcomes measured in preterm survivors at preschool age. Our objective was to evaluate parent-reported child HS outcomes and their relationship to neurodevelopmental outcomes at 36 months of age in very preterm survivors.

Design Prospective population-based cohort study.

Setting Perinatal follow-up programme.

Patients Infants <31 weeks’ gestational age born from 2014 to 2016.

Outcome measures Parents completed the Health Status Classification System for Pre-School Children questionnaire at 36 months. At the same age, neurodevelopmental assessments were completed to determine neurodevelopmental impairment (NDI). NDI was categorised as none, ‘mild’ or ‘significant’ (moderate or severe cerebral palsy, Bayley Scales of Infant and Toddler Development - Third Edition <70, blind or required hearing aid).

Results Of 118 children, 87 (73.7%) parents reported their child had an HS concern (mild: 61 (51%); moderate: 16 (13.6%); and severe: 10 (8.5%)). Mild and significant NDIs were observed in 17 (14.4%) and 14 (11.9%) children, respectively. For the 14 (12%) children with significant NDI, 7 (50.0%) parents reported severe and 4 (28.6%) reported moderate concerns. Conversely, for 26 (22%) children with parent-reported moderate to severe concerns, 11 (42.3%) met the criteria for significant NDI. There was a moderate positive correlation between parental concern and NDI status (Spearman correlation=0.46, p<0.0001).

Conclusions Parental HS concerns only moderately correlated with the NDI status. Of the 12% of children with significant NDI, only half of the parents reported severe HS concerns.

  • Neonatology
  • Child Health
  • Child Development

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.

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Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.

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  • Presented at This work was previously presented at the 2023 Pediatric Academic Society Annual Meeting and the 2023 Canadian Paediatric Society Annual Conference.

  • Contributors SG conceptualised and designed the study, supervised the drafting of the initial manuscript, and is the acting guarantor. SM drafted the initial manuscript, designed the figures and was involved in the statistical analysis. AS completed the bulk of the data collection, organisation and statistical analysis. NS performed and critically reviewed the statistical analysis. ARS, PSS and MC-Y helped in the interpretation of the study findings. All authors critically reviewed the manuscript and approved the final manuscript as submitted.

  • Funding The study was supported by the IWK Health Centre category A grant (#1022498) and IWK Establishment grant (#1026365) (to SG), and the Dalhousie Faculty of Medicine Gladys Osman Estate Summer Studentship (to SM).

  • 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.