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Redefining Neurodevelopmental Impairment

Perspectives of Very Preterm Birth Stakeholders

Bibliographic Data

ID15714775
AuthorsAnne Synnes (0000-0002-6917-0978, University of British Columbia, corresponding author), Amarpreet Chera (0009-0000-5063-2266, University of British Columbia), Lindsay L Richter (0009-0008-4662-320X, University of British Columbia), Jeffrey N Bone (0000-0001-7704-1677, BC Children's Hospital), Claude Julie Bourque (0000-0002-9407-0872, Centre Hospitalier Universitaire Sainte-Justine), Sofía Zhang-Jiang (University of British Columbia), Rebecca Pearce (0009-0006-7347-9093, McGill University), Annie Janvier (0000-0002-5462-9352, Centre Hospitalier Universitaire Sainte-Justine), Thuy Mai Luu (0000-0003-2222-186X, Centre Hospitalier Universitaire Sainte-Justine)
Year2023
Volume10
Issue5
Pages880-880
Publication date2023-05-14
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueChildren (JOURNAL)
Journal identifiersISSN: 2227-9067 • E-ISSN: 2227-9067
PublisherMultidisciplinary Digital Publishing Institute (PUBLISHER • CH)
DOI10.3390/children10050880
PMID37238428
OpenAlexW4376614437
LanguageEN
Citations received1
References cited29

Children born very preterm are at risk of severe neurodevelopmental impairment, a composite endpoint that includes cerebral palsy, developmental delay, and hearing and visual impairment defined by medical professionals. We aimed to describe preterm birth stakeholders' perspectives on this classification. Ten clinical scenarios describing 18-month-old children with different components of severe neurodevelopmental impairment and one scenario of a typically developing child (control) were distributed to parents and stakeholders using a snowball sampling technique. For each scenario, participants rated health on a scale from 0 to 10 and whether the scenario represented a severe condition. Results were analyzed descriptively and mean differences from the control scenario were compared using a linear mixed-effects model. Stakeholders (number = 827) completed 4553 scenarios. Median health scores for each scenario varied from 6 to 10. The rating for the cerebral palsy and language delay scenario was significantly lower (mean difference -4.3; 95% confidence interval: -4.4, -4.1) than the control. The proportion of respondents rating a scenario as "severe" ranged from 5% for cognitive delay to 55% for cerebral palsy and language delay. Most participants disagreed with the rating used in research to describe severe neurodevelopmental impairment in preterm children. The term should be redefined to align with stakeholder perceptions

Audiology · Cerebral palsy · Confidence interval · Developmental psychology · Physical medicine and rehabilitation · Psychiatry · Psychological intervention · Rating scale · Cerebral Palsy and Movement Disorders · Infant Development and Preterm Care · Medicine · Neonatal Respiratory Health Research · Psychology · Pediatrics

  • Opportunities and Challenges of Prognostic Models for Extremely Preterm Infants

    Open Access•Angret de Boer, Pauline E van Beek et al.•Children•2023

  • Development and reliability of a system to classify gross motor function in children with cerebral palsy

    Open Access•Robert Palisano, Robert J Palisano et al.•Developmental Medicine & Child…•1997

  • Bayley Scales of Infant and Toddler Development, Third Edition

    Nancy Bayley•PsycTESTS Dataset•2012

Unique citing works1
Citations per year0,33
Citation span2023 - 2023 (1)
Citation velocityhistorical
Highly citedNo
Citation typesNeutral: 1

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