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. 2020 Sep;105(5):538-544.
doi: 10.1136/archdischild-2019-317991. Epub 2020 Feb 6.

Priorities for collaborative research using very preterm birth cohorts

Jennifer Zeitlin  1 , Mariane Sentenac  2 , Andrei S Morgan  2 , Pierre Yves Ancel  2 , Henrique Barros  3 , Marina Cuttini  4 , Elizabeth Draper  5 , Samantha Johnson  5 , Jo Lebeer  6 , Rolf F Maier  7 , Mikael Norman  8   9 , Heili Varendi  10 ; RECAP Preterm child cohort research group
Collaborators, Affiliations

Priorities for collaborative research using very preterm birth cohorts

Jennifer Zeitlin et al. Arch Dis Child Fetal Neonatal Ed. 2020 Sep.

Abstract

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.

Keywords: epidemiology; neonatology; neurodevelopment; patient perspective.

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Conflict of interest statement

Competing interests: None declared.

Figures

Figure 1
Figure 1
Methodology for the consultation process to identify research priorities on the consequences of very preterm birth.
Figure 2
Figure 2
Themes most often selected in the top 10 priority lists by background of panel members (percentage of responses by group). Note: background category ‘other’ not included because of its small size and heterogeneous composition.
See this image and copyright information in PMC

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