دورية أكاديمية
Core outcome set for research studies evaluating treatments for twin-twin transfusion syndrome.
| العنوان: | Core outcome set for research studies evaluating treatments for twin-twin transfusion syndrome. |
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| المؤلفون: | Perry H; Vascular Biology Research Centre, Molecular and Clinical Sciences Research Institute, St George's University of London, London, UK.; Fetal Medicine Unit, St George's University Hospitals NHS Foundation Trust, University of London, London, UK., Duffy JMN; Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.; Balliol College, University of Oxford, Oxford, UK., Reed K; Twin and Multiple Births Association (TAMBA), Aldershot, UK., Baschat A; The Johns Hopkins Center for Fetal Therapy, Baltimore, MD, USA., Deprest J; Department of Obstetrics and Gynecology, University Hospitals of KU Leuven, Leuven, Belgium.; Institute for Women's Health, University College London, London, UK., Hecher K; Department of Obstetrics and Fetal Medicine, University Medical Center Hamburg-Eppendorf, Neues Klinikum, Hamburg, Germany., Lewi L; Department of Obstetrics and Gynecology, University Hospitals of KU Leuven, Leuven, Belgium., Lopriore E; Department of Pediatrics, Leiden University Medical Center, Leiden, The Netherlands., Oepkes D; Division of Fetal Medicine, Department of Obstetrics, Leiden University Medical Center, Leiden, The Netherlands., Khalil A; Vascular Biology Research Centre, Molecular and Clinical Sciences Research Institute, St George's University of London, London, UK.; Fetal Medicine Unit, St George's University Hospitals NHS Foundation Trust, University of London, London, UK. |
| مؤلفون مشاركون: | International Collaboration to Harmonise Outcomes for Twin-Twin Transfusion Syndrome (CHOOSE) |
| المصدر: | Ultrasound in obstetrics & gynecology : the official journal of the International Society of Ultrasound in Obstetrics and Gynecology [Ultrasound Obstet Gynecol] 2019 Aug; Vol. 54 (2), pp. 255-261. Date of Electronic Publication: 2019 Jul 11. |
| نوع المنشور: | Journal Article |
| اللغة: | English |
| بيانات الدورية: | Publisher: John Wiley & Sons, Ltd Country of Publication: England NLM ID: 9108340 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1469-0705 (Electronic) Linking ISSN: 09607692 NLM ISO Abbreviation: Ultrasound Obstet Gynecol Subsets: MEDLINE |
| أسماء مطبوعة: | Publication: 2003- : Chichester, West Sussex, UK : John Wiley & Sons, Ltd. Original Publication: Carnforth, Lancs, UK ; Park Ridge, N.J., USA : Parthenon Pub., c1991- |
| مواضيع طبية MeSH: | Endpoint Determination/*methods , Fetofetal Transfusion/*therapy , Outcome Assessment, Health Care/*trends , Pregnancy Outcome/*epidemiology, Adolescent ; Adult ; Consensus ; Delphi Technique ; Female ; Fetofetal Transfusion/diagnosis ; Gestational Age ; Health Occupations ; Humans ; Male ; Maternal Mortality ; Middle Aged ; Pregnancy ; Prospective Studies ; Research Design ; Stakeholder Participation ; Surveys and Questionnaires ; Treatment Outcome ; Young Adult |
| مستخلص: | Objective: To develop, using a Delphi procedure and a nominal group technique, a core outcome set (COS) for studies evaluating treatments for twin-twin transfusion syndrome (TTTS), which should assist in standardizing outcome selection, collection and reporting in future research studies. Methods: An international steering group comprising healthcare professionals, researchers and patients with experience of TTTS guided the development of this COS. Potential core outcomes, identified through a comprehensive literature review and supplemented by outcomes suggested by the steering group, were entered into a three-round Delphi survey. Healthcare professionals, researchers, and patients or relatives of patients who had experienced TTTS were invited to participate. Consensus was defined a priori using the 15%/70% definition of the Core Outcome Measures in Effectiveness Trials (COMET) initiative. The modified nominal group technique was used to evaluate the consensus outcomes in a face-to-face consultation meeting and identify the final COS. Results: One hundred and three participants, from 29 countries, participated in the three-round Delphi survey. Of those, 88 completed all three rounds. Twenty-two consensus outcomes were identified through the Delphi procedure and entered into the modified nominal group technique. The consensus meeting was attended by 11 healthcare professionals, two researchers and three patients; 12 core outcomes were prioritized for inclusion in the COS. Fetal core outcomes included live birth, pregnancy loss (including miscarriage, stillbirth, termination of pregnancy and neonatal mortality), subsequent death of a cotwin following single-twin demise at the time of treatment, recurrence of TTTS, twin anemia-polycythemia sequence and amniotic band syndrome. Neonatal core outcomes included gestational age at delivery, birth weight, brain injury syndromes and ischemic limb injury. Maternal core outcomes included maternal mortality and admission to Level-2 or -3 care setting. One aspirational outcome, neurodevelopment at 18-24 months of age, was also prioritized. Conclusions: Implementing the COS for TTTS within future research studies could make a substantial contribution to advancing the usefulness of research in TTTS. Standardized definitions and measurement instruments are now required for individual core outcomes. Copyright © 2018 ISUOG. Published by John Wiley & Sons Ltd. (Copyright © 2018 ISUOG. Published by John Wiley & Sons Ltd.) |
| معلومات مُعتمدة: | National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research; FWO 1804718N Fonds Wetenschappelijk Onderzoek Vlaanderen; WT101957 United Kingdom WT_ Wellcome Trust; Great Ormond Street Hospital Charity fund; DRF-2014-07-051 United Kingdom DH_ Department of Health; Care South London at King's College Hospital NHS Foundation Trust; NS/A000027/1 Engineering and Physical Sciences Research Council (ESPRC) |
| فهرسة مساهمة: | Investigator: C Coroyannakis; D Duffy; E Giallongo; H Turier; J Toms; K Lundie; K Paramanantham; L Burton; S Windsor; S Francis Keywords: TTTS; consensus study; core outcome set; modified Delphi method; modified nominal group technique; twin-twin transfusion syndrome |
| تواريخ الأحداث: | Date Created: 20181207 Date Completed: 20200207 Latest Revision: 20210211 |
| رمز التحديث: | 20221213 |
| DOI: | 10.1002/uog.20183 |
| PMID: | 30520170 |
| قاعدة البيانات: | MEDLINE |
Full Text Finder | تدمد: | 1469-0705 |
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| DOI: | 10.1002/uog.20183 |