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      Priorities for collaborative research using very preterm birth cohorts

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          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.

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          Most cited references23

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          Research guidelines for the Delphi survey technique.

          Consensus methods such as the Delphi survey technique are being employed to help enhance effective decision-making in health and social care. The Delphi survey is a group facilitation technique, which is an iterative multistage process, designed to transform opinion into group consensus. It is a flexible approach, that is used commonly within the health and social sciences, yet little guidance exists to help researchers undertake this method of data collection. This paper aims to provide an understanding of the preparation, action steps and difficulties that are inherent within the Delphi. Used systematically and rigorously, the Delphi can contribute significantly to broadening knowledge within the nursing profession. However, careful thought must be given before using the method; there are key issues surrounding problem identification, researcher skills and data presentation that must be addressed. The paper does not claim to be definitive; it purports to act as a guide for those researchers who wish to exploit the Delphi methodology.
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            How to use the nominal group and Delphi techniques

            Introduction The Nominal Group Technique (NGT) and Delphi Technique are consensus methods used in research that is directed at problem-solving, idea-generation, or determining priorities. While consensus methods are commonly used in health services literature, few studies in pharmacy practice use these methods. This paper provides an overview of the NGT and Delphi technique, including the steps involved and the types of research questions best suited to each method, with examples from the pharmacy literature. Methodology The NGT entails face-to-face discussion in small groups, and provides a prompt result for researchers. The classic NGT involves four key stages: silent generation, round robin, clarification and voting (ranking). Variations have occurred in relation to generating ideas, and how ‘consensus’ is obtained from participants. The Delphi technique uses a multistage self-completed questionnaire with individual feedback, to determine consensus from a larger group of ‘experts.’ Questionnaires have been mailed, or more recently, e-mailed to participants. When to use The NGT has been used to explore consumer and stakeholder views, while the Delphi technique is commonly used to develop guidelines with health professionals. Method choice is influenced by various factors, including the research question, the perception of consensus required, and associated practicalities such as time and geography. Limitations The NGT requires participants to personally attend a meeting. This may prove difficult to organise and geography may limit attendance. The Delphi technique can take weeks or months to conclude, especially if multiple rounds are required, and may be complex for lay people to complete.
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              Guidance on Conducting and REporting DElphi Studies (CREDES) in palliative care: Recommendations based on a methodological systematic review.

              The Delphi technique is widely used for the development of guidance in palliative care, having impact on decisions with relevance for patient care.
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                Author and article information

                Journal
                Arch Dis Child Fetal Neonatal Ed
                Arch Dis Child Fetal Neonatal Ed
                fetalneonatal
                fnn
                Archives of Disease in Childhood. Fetal and Neonatal Edition
                BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                1359-2998
                1468-2052
                September 2020
                6 February 2020
                : 105
                : 5
                : 538-544
                Affiliations
                [1 ] Université de Paris, CRESS, Obstetrical Perinatal and Pediatric Epidemiology Research Team, EPOPé, INSERM, INRA, F-75004 , Paris, France
                [2 ] EPIUnit-- Instituto de Saúde Pública da Universidade do Porto , Porto, Portugal
                [3 ] Clinical Care and Management Innovation Research Area, Bambino Gesù Children’s Hospital , Rome, Italy
                [4 ] Department of Health Sciences, University of Leicester , Leicester, United Kingdom
                [5 ] departmentDepartment of Primary & Interdisciplinary Care, Disability Studies, Faculty of Medicine , University of Antwerp , Antwerpen, Belgium
                [6 ] Children's Hospital, University Hospital, Philipps University Marburg , Marburg, Germany
                [7 ] Department of Clinical Science, Intervention and Technology, Karolinska Institutet , Stockholm, Sweden
                [8 ] Department of Neonatal Medicine, Karolinska University Hospital , Stockholm, Sweden
                [9 ] University of Tartu, Tartu University Hospital , Tartu, Estonia
                Author notes
                [Correspondence to ] Dr Jennifer Zeitlin, INSERM U1153, Paris 75014, France; jennifer.zeitlin@ 123456inserm.fr
                Article
                fetalneonatal-2019-317991
                10.1136/archdischild-2019-317991
                7547907
                32029530
                5e8f0507-e64c-4eb5-be21-e308e17cd710
                © Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.

                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/.

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                Original Research
                1506
                Custom metadata
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                Neonatology
                epidemiology,neonatology,neurodevelopment,patient perspective
                Neonatology
                epidemiology, neonatology, neurodevelopment, patient perspective

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