StressCovidV1, Main, Exploration, bibRecord, 000002

Priorities for collaborative research using very preterm birth cohorts

Identifieur interne : 000002 ( Main/Exploration ); précédent : 000001; suivant : 000003

Priorities for collaborative research using very preterm birth cohorts

Auteurs : Jennifer Zeitlin [France] ; Mariane Sentenac [France] ; Andrei Morgan [France] ; Pierre Yves Ancel [France] ; Henrique Barros [Portugal] ; Marina Cuttini [Italie] ; Elizabeth Draper [Royaume-Uni] ; Samantha Johnson [Royaume-Uni] ; Jo Lebeer [Belgique] ; Rolf Maier [Allemagne] ; Mikael Norman [Suède] ; Heili Varendi [Estonie]

Source :

Archives of disease in childhood.Fetal and neonatal edition [ 1359-2998 ] ; 2020-02-06.

RBID : Hal:inserm-02504038

English descriptors

mix :
- epidemiology, neonatology, neurodevelopment, patient perspective.

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.

Url:

https://www.hal.inserm.fr/inserm-02504038

DOI: 10.1136/archdischild-2019-317991

Affiliations:

Allemagne, Belgique, Estonie, France, Italie, Portugal, Royaume-Uni, Suède
Province d'Anvers, Région flamande
Anvers
Université d'Anvers

Links toward previous steps (curation, corpus...)

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Le document en format XML

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          <date type="start">2020-01-01</date>
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<country>France</country>
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<author><name sortKey="Barros, Henrique" sort="Barros, Henrique" uniqKey="Barros H" first="Henrique" last="Barros">Henrique Barros</name>
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          <desc>            <address>              <addrLine>Porto</addrLine>
              <country key="PT"></country>
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          <desc>            <address>              <addrLine>Porto</addrLine>
              <country key="PT"></country>
            </address>
          </desc>
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<tutelle active="#struct-19144" type="indirect"><org type="institution" xml:id="struct-19144" status="VALID">          <orgName>Universidade do Porto [Porto]</orgName>
          <desc>            <address>              <addrLine>Praça de Gomes Teixeira, 4099-002 Porto</addrLine>
              <country key="PT"></country>
            </address>
            <ref type="url">https://sigarra.up.pt/up/pt/home</ref>
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        </org>
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</hal:affiliation>
<country>Portugal</country>
</affiliation>
</author>
<author><name sortKey="Cuttini, Marina" sort="Cuttini, Marina" uniqKey="Cuttini M" first="Marina" last="Cuttini">Marina Cuttini</name>
<affiliation wicri:level="1"><hal:affiliation type="regrouplaboratory" xml:id="struct-1003809" status="INCOMING">          <orgName>Clinical Care and Management Innovation Research Area [Roma, Lazio, Italy]</orgName>
          <desc>            <address>              <country key="IT"></country>
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          <desc>            <address>              <country key="IT"></country>
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          </desc>
        </org>
</tutelle>
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</hal:affiliation>
<country>Italie</country>
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</author>
<author><name sortKey="Draper, Elizabeth" sort="Draper, Elizabeth" uniqKey="Draper E" first="Elizabeth" last="Draper">Elizabeth Draper</name>
<affiliation wicri:level="1"><hal:affiliation type="laboratory" xml:id="struct-162541" status="VALID">          <orgName>Department of Health Sciences [Leicester]</orgName>
          <desc>            <address>              <addrLine>214f Adrian Building, University Road;LE1 7RH;Leicester</addrLine>
              <country key="GB"></country>
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            <ref type="url">http://www2.le.ac.uk/departments/health-sciences</ref>
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          <listRelation>            <relation active="#struct-300751" type="direct"></relation>
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        <tutelles><tutelle active="#struct-300751" type="direct"><org type="institution" xml:id="struct-300751" status="VALID">          <orgName>University of Leicester</orgName>
          <desc>            <address>              <addrLine>University Rd, Leicester LE1 7RH</addrLine>
              <country key="GB"></country>
            </address>
            <ref type="url">https://le.ac.uk</ref>
          </desc>
        </org>
</tutelle>
</tutelles>
</hal:affiliation>
<country>Royaume-Uni</country>
</affiliation>
</author>
<author><name sortKey="Johnson, Samantha" sort="Johnson, Samantha" uniqKey="Johnson S" first="Samantha" last="Johnson">Samantha Johnson</name>
<affiliation wicri:level="1"><hal:affiliation type="laboratory" xml:id="struct-162541" status="VALID">          <orgName>Department of Health Sciences [Leicester]</orgName>
          <desc>            <address>              <addrLine>214f Adrian Building, University Road;LE1 7RH;Leicester</addrLine>
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<country>Royaume-Uni</country>
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<author><name sortKey="Lebeer, Jo" sort="Lebeer, Jo" uniqKey="Lebeer J" first="Jo" last="Lebeer">Jo Lebeer</name>
<affiliation wicri:level="1"><hal:affiliation type="laboratory" xml:id="struct-1003826" status="INCOMING">          <orgName>Department of Primary & Interdisciplinary Care, Disability Studies [Antwerpen, Belgium]</orgName>
          <orgName type="acronym">Faculty of Medicine</orgName>
          <desc>            <address>              <country key="BE"></country>
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              <country key="BE"></country>
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<country>Belgique</country>
<placeName><settlement type="city">Anvers</settlement>
<region>Région flamande</region>
<region type="district" nuts="2">Province d'Anvers</region>
</placeName>
<orgName type="university">Université d'Anvers</orgName>
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</author>
<author><name sortKey="Maier, Rolf" sort="Maier, Rolf" uniqKey="Maier R" first="Rolf" last="Maier">Rolf Maier</name>
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          <desc>            <address>              <addrLine>Biegenstrasse 1035037 Marburg</addrLine>
              <country key="DE"></country>
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          </desc>
        </hal:affiliation>
<country>Allemagne</country>
</affiliation>
</author>
<author><name sortKey="Norman, Mikael" sort="Norman, Mikael" uniqKey="Norman M" first="Mikael" last="Norman">Mikael Norman</name>
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          </listRelation>
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          <desc>            <address>              <addrLine>Solnavägen 1, 171 77 SolnaStockholm</addrLine>
              <country key="SE"></country>
            </address>
            <ref type="url">http://ki.se</ref>
          </desc>
        </org>
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</hal:affiliation>
<country>Suède</country>
</affiliation>
</author>
<author><name sortKey="Varendi, Heili" sort="Varendi, Heili" uniqKey="Varendi H" first="Heili" last="Varendi">Heili Varendi</name>
<affiliation wicri:level="1"><hal:affiliation type="institution" xml:id="struct-116369" status="VALID">          <orgName>University of Tartu</orgName>
          <desc>            <address>              <addrLine>University of Tartu, Ülikooli 18, 50090 TARTU</addrLine>
              <country key="EE"></country>
            </address>
            <ref type="url">http://www.ut.ee/en</ref>
          </desc>
        </hal:affiliation>
<country>Estonie</country>
</affiliation>
</author>
</analytic>
<idno type="DOI">10.1136/archdischild-2019-317991</idno>
<series><title level="j">Archives of disease in childhood.Fetal and neonatal edition</title>
<idno type="ISSN">1359-2998</idno>
<imprint><date type="datePub">2020-02-06</date>
</imprint>
</series>
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<profileDesc><textClass><keywords scheme="mix" xml:lang="en"><term>epidemiology</term>
<term>neonatology</term>
<term>neurodevelopment</term>
<term>patient perspective</term>
</keywords>
</textClass>
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<front><div type="abstract" xml:lang="en">              <p>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.</p>
            </div>
</front>
</TEI>
<affiliations><list><country><li>Allemagne</li>
<li>Belgique</li>
<li>Estonie</li>
<li>France</li>
<li>Italie</li>
<li>Portugal</li>
<li>Royaume-Uni</li>
<li>Suède</li>
</country>
<region><li>Province d'Anvers</li>
<li>Région flamande</li>
</region>
<settlement><li>Anvers</li>
</settlement>
<orgName><li>Université d'Anvers</li>
</orgName>
</list>
<tree><country name="France"><noRegion><name sortKey="Zeitlin, Jennifer" sort="Zeitlin, Jennifer" uniqKey="Zeitlin J" first="Jennifer" last="Zeitlin">Jennifer Zeitlin</name>
</noRegion>
<name sortKey="Ancel, Pierre Yves" sort="Ancel, Pierre Yves" uniqKey="Ancel P" first="Pierre Yves" last="Ancel">Pierre Yves Ancel</name>
<name sortKey="Morgan, Andrei" sort="Morgan, Andrei" uniqKey="Morgan A" first="Andrei" last="Morgan">Andrei Morgan</name>
<name sortKey="Sentenac, Mariane" sort="Sentenac, Mariane" uniqKey="Sentenac M" first="Mariane" last="Sentenac">Mariane Sentenac</name>
</country>
<country name="Portugal"><noRegion><name sortKey="Barros, Henrique" sort="Barros, Henrique" uniqKey="Barros H" first="Henrique" last="Barros">Henrique Barros</name>
</noRegion>
</country>
<country name="Italie"><noRegion><name sortKey="Cuttini, Marina" sort="Cuttini, Marina" uniqKey="Cuttini M" first="Marina" last="Cuttini">Marina Cuttini</name>
</noRegion>
</country>
<country name="Royaume-Uni"><noRegion><name sortKey="Draper, Elizabeth" sort="Draper, Elizabeth" uniqKey="Draper E" first="Elizabeth" last="Draper">Elizabeth Draper</name>
</noRegion>
<name sortKey="Johnson, Samantha" sort="Johnson, Samantha" uniqKey="Johnson S" first="Samantha" last="Johnson">Samantha Johnson</name>
</country>
<country name="Belgique"><region name="Région flamande"><name sortKey="Lebeer, Jo" sort="Lebeer, Jo" uniqKey="Lebeer J" first="Jo" last="Lebeer">Jo Lebeer</name>
</region>
</country>
<country name="Allemagne"><noRegion><name sortKey="Maier, Rolf" sort="Maier, Rolf" uniqKey="Maier R" first="Rolf" last="Maier">Rolf Maier</name>
</noRegion>
</country>
<country name="Suède"><noRegion><name sortKey="Norman, Mikael" sort="Norman, Mikael" uniqKey="Norman M" first="Mikael" last="Norman">Mikael Norman</name>
</noRegion>
</country>
<country name="Estonie"><noRegion><name sortKey="Varendi, Heili" sort="Varendi, Heili" uniqKey="Varendi H" first="Heili" last="Varendi">Heili Varendi</name>
</noRegion>
</country>
</tree>
</affiliations>
</record>

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Priorities for collaborative research using very preterm birth cohorts

Priorities for collaborative research using very preterm birth cohorts

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