Core outcome set for research studies evaluating treatments for twin–twin transfusion syndrome

the International Collaboration to Harmonise Outcomes for Twin–Twin Transfusion Syndrome (CHOOSE)

Research output: Contribution to journalArticle

Abstract

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 syndrome 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.

Original languageEnglish (US)
JournalUltrasound in Obstetrics and Gynecology
DOIs
StatePublished - Jan 1 2019

Fingerprint

Outcome Assessment (Health Care)
Consensus
Research Personnel
Delivery of Health Care
Therapeutics
Amniotic Band Syndrome
Fetofetal Transfusion
Pregnancy
Stillbirth
Maternal Mortality
Live Birth
Infant Mortality
Spontaneous Abortion
Birth Weight
Brain Injuries
Gestational Age
Referral and Consultation
Extremities
Mothers
Recurrence

Keywords

  • consensus study
  • core outcome set
  • modified Delphi method
  • modified nominal group technique
  • TTTS
  • twin–twin transfusion syndrome

ASJC Scopus subject areas

  • Radiological and Ultrasound Technology
  • Reproductive Medicine
  • Radiology Nuclear Medicine and imaging
  • Obstetrics and Gynecology

Cite this

the International Collaboration to Harmonise Outcomes for Twin–Twin Transfusion Syndrome (CHOOSE) (2019). Core outcome set for research studies evaluating treatments for twin–twin transfusion syndrome. Ultrasound in Obstetrics and Gynecology. https://doi.org/10.1002/uog.20183

Core outcome set for research studies evaluating treatments for twin–twin transfusion syndrome. / the International Collaboration to Harmonise Outcomes for Twin–Twin Transfusion Syndrome (CHOOSE).

In: Ultrasound in Obstetrics and Gynecology, 01.01.2019.

Research output: Contribution to journalArticle

the International Collaboration to Harmonise Outcomes for Twin–Twin Transfusion Syndrome (CHOOSE) 2019, 'Core outcome set for research studies evaluating treatments for twin–twin transfusion syndrome', Ultrasound in Obstetrics and Gynecology. https://doi.org/10.1002/uog.20183
the International Collaboration to Harmonise Outcomes for Twin–Twin Transfusion Syndrome (CHOOSE). Core outcome set for research studies evaluating treatments for twin–twin transfusion syndrome. Ultrasound in Obstetrics and Gynecology. 2019 Jan 1. https://doi.org/10.1002/uog.20183
the International Collaboration to Harmonise Outcomes for Twin–Twin Transfusion Syndrome (CHOOSE). / Core outcome set for research studies evaluating treatments for twin–twin transfusion syndrome. In: Ultrasound in Obstetrics and Gynecology. 2019.
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