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Published on: January 12, 2018
Priorities for collaborative research using very preterm birth cohorts
Jennifer Zeitlin1, Mariane Sentenac2, Andrei S Morgan2
1Université de Paris, CRESS, Obstetrical Perinatal and Pediatric Epidemiology Research Team, EPOPé, INSERM, INRA, F-75004, Paris, France jennifer.zeitlin@inserm.fr.
Insights
Research priorities for very preterm (VPT) birth outcomes were developed using a Delphi process. Key areas include education, care for extremely preterm infants, growth, and socioemotional well-being for children and parents.
Area of Science:
- Neonatal research
- Pediatric outcomes
- Public health
Background:
- The RECAP Preterm platform aggregates data from 23 European cohorts of very preterm (VPT) births.
- Understanding the long-term consequences of VPT birth is crucial for improving care and outcomes.
Purpose of the Study:
- To establish research priorities concerning the consequences of very preterm birth.
- To inform the research agenda for the RECAP Preterm platform.
Main Methods:
- A two-round modified Delphi consensus process was employed.
- An international multidisciplinary stakeholder panel ranked 28 research themes related to childhood outcomes.
- Feedback and new theme suggestions were incorporated in the second round.
Main Results:
- Sixty-four stakeholders from 17 countries participated.
- Top-ranked themes included education, care/outcomes of extremely preterm births, growth, nutrition, emotional well-being, social inclusion, parental stress, and social circumstances.
- Consensus was observed across diverse professional and personal backgrounds.
Conclusions:
- A comprehensive set of research priorities for VPT birth consequences was identified.
- Strong consensus emerged on key areas, particularly socioemotional needs of children and parents.
- These findings highlight under-researched aspects requiring further investigation.
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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