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Redefining Neurodevelopmental Impairment: Perspectives of Very Preterm Birth Stakeholders
Anne Synnes1, Amarpreet Chera2, Lindsay L Richter2
1Department of Pediatrics, University of British Columbia and BC Children's Hospital Research Institute, Vancouver, BC V5Z 4H4, Canada.
Insights
Parents and stakeholders found the medical definition of severe neurodevelopmental impairment in preterm infants inadequate. Reclassifying these impairments is necessary to align with real-world perceptions and improve care for children born very preterm.
Area of Science:
- Neonatal Medicine
- Developmental Pediatrics
- Public Health
Background:
- Children born very preterm face risks for severe neurodevelopmental impairment (NDI).
- Current NDI classifications are medically defined, potentially not reflecting stakeholder perspectives.
- Understanding stakeholder views is crucial for accurate assessment and support.
Purpose of the Study:
- To investigate preterm birth stakeholders' perspectives on the classification of severe NDI.
- To compare stakeholder perceptions with existing medical definitions of NDI in preterm infants.
Main Methods:
- Distributed 10 clinical scenarios of 18-month-olds with varying NDI components to parents and stakeholders.
- Participants rated child health (0-10 scale) and severity for each scenario.
- Analyzed data descriptively and used linear mixed-effects models for comparisons against a control scenario.
Main Results:
- 827 stakeholders completed 4553 scenarios, with health scores ranging from 6 to 10.
- Cerebral palsy and language delay scenario received significantly lower health ratings compared to the control.
- Perception of 'severe' varied widely, from 5% for cognitive delay to 55% for cerebral palsy and language delay.
Conclusions:
- Most stakeholders disagreed with the current research-based definition of severe NDI in preterm children.
- The established definition of severe NDI requires re-evaluation.
- Redefining severe NDI is essential to align with stakeholder perceptions and improve clinical relevance.
Abstract:
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.
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