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Priorities for collaborative research using very preterm birth cohorts

OBJECTIVES: To develop research priorities on the consequences of very preterm (VPT) birth for the RECAP Preterm platform which brings together data from 23 European VPT birth cohorts. DESIGN AND SETTING: This study used a two-round modified Delphi consensus process. Round 1 was based on 28 research...

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Autores principales: Zeitlin, Jennifer, Sentenac, Mariane, Morgan, Andrei S, Ancel, Pierre Yves, Barros, Henrique, Cuttini, Marina, Draper, Elizabeth, Johnson, Samantha, Lebeer, Jo, Maier, Rolf F, Norman, Mikael, Varendi, Heili
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7547907/
https://www.ncbi.nlm.nih.gov/pubmed/32029530
http://dx.doi.org/10.1136/archdischild-2019-317991
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author Zeitlin, Jennifer
Sentenac, Mariane
Morgan, Andrei S
Ancel, Pierre Yves
Barros, Henrique
Cuttini, Marina
Draper, Elizabeth
Johnson, Samantha
Lebeer, Jo
Maier, Rolf F
Norman, Mikael
Varendi, Heili
author_facet Zeitlin, Jennifer
Sentenac, Mariane
Morgan, Andrei S
Ancel, Pierre Yves
Barros, Henrique
Cuttini, Marina
Draper, Elizabeth
Johnson, Samantha
Lebeer, Jo
Maier, Rolf F
Norman, Mikael
Varendi, Heili
author_sort Zeitlin, Jennifer
collection PubMed
description OBJECTIVES: To develop research priorities on the consequences of very preterm (VPT) birth for the RECAP Preterm platform which brings together data from 23 European VPT birth cohorts. DESIGN AND SETTING: This study used a two-round modified Delphi consensus process. Round 1 was based on 28 research themes related to childhood outcomes (<12 years) derived from consultations with cohort researchers. An external panel of multidisciplinary stakeholders then ranked their top 10 themes and provided comments. In round 2, panel members provided feedback on rankings and on new themes suggested in round 1. RESULTS: Of 71 individuals contacted, 64 (90%) participated as panel members comprising obstetricians, neonatologists, nurses, general and specialist paediatricians, psychologists, physiotherapists, parents, adults born preterm, policy makers and epidemiologists from 17 countries. All 28 initial themes were ranked in the top 10 by at least six panel members. Highest ranking themes were: education (73% of panel members' top 10 choices); care and outcomes of extremely preterm births, including ethical decisions (63%); growth and nutrition (60%); emotional well-being and social inclusion (55%); parental stress (55%) and impact of social circumstances on outcomes (52%). Highest ranking themes were robust across panel members classified by background. 15 new themes had at least 6 top 10 endorsements in round 2. CONCLUSIONS: This study elicited a broad range of research priorities on the consequences of VPT birth, with good consensus on highest ranks between stakeholder groups. Several highly ranked themes focused on the socioemotional needs of children and parents, which have been less studied.
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spelling pubmed-75479072020-10-22 Priorities for collaborative research using very preterm birth cohorts Zeitlin, Jennifer Sentenac, Mariane Morgan, Andrei S Ancel, Pierre Yves Barros, Henrique Cuttini, Marina Draper, Elizabeth Johnson, Samantha Lebeer, Jo Maier, Rolf F Norman, Mikael Varendi, Heili Arch Dis Child Fetal Neonatal Ed Original Research OBJECTIVES: To develop research priorities on the consequences of very preterm (VPT) birth for the RECAP Preterm platform which brings together data from 23 European VPT birth cohorts. DESIGN AND SETTING: This study used a two-round modified Delphi consensus process. Round 1 was based on 28 research themes related to childhood outcomes (<12 years) derived from consultations with cohort researchers. An external panel of multidisciplinary stakeholders then ranked their top 10 themes and provided comments. In round 2, panel members provided feedback on rankings and on new themes suggested in round 1. RESULTS: Of 71 individuals contacted, 64 (90%) participated as panel members comprising obstetricians, neonatologists, nurses, general and specialist paediatricians, psychologists, physiotherapists, parents, adults born preterm, policy makers and epidemiologists from 17 countries. All 28 initial themes were ranked in the top 10 by at least six panel members. Highest ranking themes were: education (73% of panel members' top 10 choices); care and outcomes of extremely preterm births, including ethical decisions (63%); growth and nutrition (60%); emotional well-being and social inclusion (55%); parental stress (55%) and impact of social circumstances on outcomes (52%). Highest ranking themes were robust across panel members classified by background. 15 new themes had at least 6 top 10 endorsements in round 2. CONCLUSIONS: This study elicited a broad range of research priorities on the consequences of VPT birth, with good consensus on highest ranks between stakeholder groups. Several highly ranked themes focused on the socioemotional needs of children and parents, which have been less studied. BMJ Publishing Group 2020-09 2020-02-06 /pmc/articles/PMC7547907/ /pubmed/32029530 http://dx.doi.org/10.1136/archdischild-2019-317991 Text en © Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ. https://creativecommons.org/licenses/by/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.
spellingShingle Original Research
Zeitlin, Jennifer
Sentenac, Mariane
Morgan, Andrei S
Ancel, Pierre Yves
Barros, Henrique
Cuttini, Marina
Draper, Elizabeth
Johnson, Samantha
Lebeer, Jo
Maier, Rolf F
Norman, Mikael
Varendi, Heili
Priorities for collaborative research using very preterm birth cohorts
title Priorities for collaborative research using very preterm birth cohorts
title_full Priorities for collaborative research using very preterm birth cohorts
title_fullStr Priorities for collaborative research using very preterm birth cohorts
title_full_unstemmed Priorities for collaborative research using very preterm birth cohorts
title_short Priorities for collaborative research using very preterm birth cohorts
title_sort priorities for collaborative research using very preterm birth cohorts
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7547907/
https://www.ncbi.nlm.nih.gov/pubmed/32029530
http://dx.doi.org/10.1136/archdischild-2019-317991
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