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Redefining Neurodevelopmental Impairment: Perspectives of Very Preterm Birth Stakeholders

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 classifica...

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Autores principales: Synnes, Anne, Chera, Amarpreet, Richter, Lindsay L., Bone, Jeffrey N., Bourque, Claude Julie, Zhang-Jiang, Sofia, Pearce, Rebecca, Janvier, Annie, Luu, Thuy Mai
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10217698/
https://www.ncbi.nlm.nih.gov/pubmed/37238428
http://dx.doi.org/10.3390/children10050880
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author Synnes, Anne
Chera, Amarpreet
Richter, Lindsay L.
Bone, Jeffrey N.
Bourque, Claude Julie
Zhang-Jiang, Sofia
Pearce, Rebecca
Janvier, Annie
Luu, Thuy Mai
author_facet Synnes, Anne
Chera, Amarpreet
Richter, Lindsay L.
Bone, Jeffrey N.
Bourque, Claude Julie
Zhang-Jiang, Sofia
Pearce, Rebecca
Janvier, Annie
Luu, Thuy Mai
author_sort Synnes, Anne
collection PubMed
description 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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spelling pubmed-102176982023-05-27 Redefining Neurodevelopmental Impairment: Perspectives of Very Preterm Birth Stakeholders Synnes, Anne Chera, Amarpreet Richter, Lindsay L. Bone, Jeffrey N. Bourque, Claude Julie Zhang-Jiang, Sofia Pearce, Rebecca Janvier, Annie Luu, Thuy Mai Children (Basel) Article 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. MDPI 2023-05-14 /pmc/articles/PMC10217698/ /pubmed/37238428 http://dx.doi.org/10.3390/children10050880 Text en © 2023 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Synnes, Anne
Chera, Amarpreet
Richter, Lindsay L.
Bone, Jeffrey N.
Bourque, Claude Julie
Zhang-Jiang, Sofia
Pearce, Rebecca
Janvier, Annie
Luu, Thuy Mai
Redefining Neurodevelopmental Impairment: Perspectives of Very Preterm Birth Stakeholders
title Redefining Neurodevelopmental Impairment: Perspectives of Very Preterm Birth Stakeholders
title_full Redefining Neurodevelopmental Impairment: Perspectives of Very Preterm Birth Stakeholders
title_fullStr Redefining Neurodevelopmental Impairment: Perspectives of Very Preterm Birth Stakeholders
title_full_unstemmed Redefining Neurodevelopmental Impairment: Perspectives of Very Preterm Birth Stakeholders
title_short Redefining Neurodevelopmental Impairment: Perspectives of Very Preterm Birth Stakeholders
title_sort redefining neurodevelopmental impairment: perspectives of very preterm birth stakeholders
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10217698/
https://www.ncbi.nlm.nih.gov/pubmed/37238428
http://dx.doi.org/10.3390/children10050880
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