Core outcome measurement set for research and clinical practice in post-COVID-19 condition (long COVID) in children and young people: an international Delphi consensus study “PC-COS Children”

Publikation: Beitrag in FachzeitschriftÜbersichtsartikel (Review)BeigetragenBegutachtung

Beitragende

  • Nina Seylanova - (Erstautor:in)
  • Anastasia Chernyavskaya - , Sechenov First Moscow State Medical University, Dmitry Rogachev National Research Center of Pediatric Hematology, Oncology and Immunology (Autor:in)
  • Natalia Degtyareva - , Sechenov First Moscow State Medical University (Autor:in)
  • Aigun Mursalova - , University of Birmingham (Autor:in)
  • Ali Ajam - , University of Birmingham (Autor:in)
  • Lin Xiao - , University of Birmingham (Autor:in)
  • Khazhar Aktulaeva - , University of Birmingham (Autor:in)
  • Philipp Roshchin - , University of Birmingham (Autor:in)
  • Polina Bobkova - , University of Birmingham (Autor:in)
  • Olalekan Lee Aiyegbusi - , University of Birmingham (Autor:in)
  • Anbarasu Theodore Anbu - , Royal Liverpool Children's NHS Trust: (Autor:in)
  • Christian Apfelbacher - , Otto-von-Guericke-Universität Magdeburg (Autor:in)
  • Ali Akbar Asadi-Pooya - , Shiraz University of Medical Sciences, Thomas Jefferson University (Autor:in)
  • Liat Ashkenazi-Hoffnung - , Schneider Childrens Medical Center Israel (Autor:in)
  • Caroline Brackel - , University of Amsterdam, Tergooi Medisch Centrum Blaricum (Autor:in)
  • Danilo Buonsenso - , Università Cattolica del Sacro Cuore, Fondazione Policlinico Universitario Agostino Gemelli IRCCS (Autor:in)
  • Wouter de Groote - , World Health Organization (Autor:in)
  • Janet V. Diaz - , Università degli studi di Padova (Autor:in)
  • Daniele Dona - , Università degli studi di Padova (Autor:in)
  • Audrey Dunn Galvin - , University College Cork (Autor:in)
  • Jon Genuneit - , Universität Leipzig (Autor:in)
  • Helen Goss - , Long Covid Kids Charity (Autor:in)
  • Sarah E. Hughes - , University of Birmingham (Autor:in)
  • Christina J. Jones - , University of Surrey (Autor:in)
  • Krutika Kuppalli - , Università degli studi di Padova (Autor:in)
  • Laura A. Malone - , Kennedy Krieger Institute, Johns Hopkins University (Autor:in)
  • Sammie McFarland - , University of Birmingham (Autor:in)
  • Dale M. Needham - , Johns Hopkins University, Johns Hopkins Medicine (Autor:in)
  • Nikita Nekliudov - , University of Washington (Autor:in)
  • Timothy R. Nicholson - , King's College London (KCL) (Autor:in)
  • Carlos R. Oliveira - , Yale University, Yale New Haven Health System (Autor:in)
  • Nicoline Schiess - , World Health Organization (Autor:in)
  • Terry Y. Segal - , University College London Hospitals NHS Foundation Trust (Autor:in)
  • Louise Sigfrid - , University of Oxford (Autor:in)
  • Claire Thorne - , University College London (Autor:in)
  • Susanne Vijverberg - , Amsterdam University Medical Centers (UMC) (Autor:in)
  • John O. Warner - , Imperial College London (Autor:in)
  • Wilson Milton Were - , Università degli studi di Padova (Autor:in)
  • Paula R. Williamson - , University of Liverpool (UOL) (Autor:in)
  • Daniel Munblit - , Sechenov First Moscow State Medical University, King's College London (KCL), Research and Clinical Center for Neuropsychiatry (Letztautor:in)
  • PC-COS Children Study Group - (Autor:in)
  • Asiah Kassim - , Women and Children Hospital (Autor:in)
  • Jennifer R. Chevinsky - , Centers for Disease Control and Prevention (Autor:in)
  • Karen Choong - , McMaster University (Autor:in)
  • Rae Duncan - , Newcastle upon Tyne Hospitals NHS Foundation Trust (Autor:in)
  • Susanna Esposito - , University of Parma (Autor:in)
  • Rebecca Foster - , Royal Surrey County Hospital NHS Foundation Trust (Autor:in)
  • Alla Guekht - , Research and Clinical Center for Neuropsychiatry (Autor:in)
  • Allison Jaure - , University of Sydney (Autor:in)
  • Carrie Mackenzie - , Sheffield Children's NHS Foundation Trust (Autor:in)
  • Jochen Schmitt - , Zentrum für evidenzbasierte Gesundheitsversorgung (Autor:in)

Abstract

The coronavirus disease 2019 (COVID-19) pandemic substantially impacted different age groups, with children and young people not exempted. Many have experienced enduring health consequences. Presently, there is no consensus on the health outcomes to assess in children and young people with post-COVID-19 condition. Furthermore, it is unclear which measurement instruments are appropriate for use in research and clinical management of children and young people with post-COVID-19. To address these unmet needs, we conducted a consensus study, aiming to develop a core outcome set (COS) and an associated core outcome measurement set (COMS) for evaluating post-COVID-19 condition in children and young people. Our methodology comprised of two phases. In phase 1 (to create a COS), we performed an extensive literature review and categorisation of outcomes, and prioritised those outcomes in a two-round online modified Delphi process followed by a consensus meeting. In phase 2 (to create the COMS), we performed another modified Delphi consensus process to evaluate measurement instruments for previously defined core outcomes from phase 1, followed by an online consensus workshop to finalise recommendations regarding the most appropriate instruments for each core outcome. In phase 1, 214 participants from 37 countries participated, with 154 (72%) contributing to both Delphi rounds. The subsequent online consensus meeting resulted in a final COS which encompassed seven critical outcomes: fatigue; post-exertion symptoms; work/occupational and study changes; as well as functional changes, symptoms, and conditions relating to cardiovascular, neuro-cognitive, gastrointestinal and physical outcomes. In phase 2, 11 international experts were involved in a modified Delphi process, selecting measurement instruments for a subsequent online consensus workshop where 30 voting participants discussed and independently scored the selected instruments. As a result of this consensus process, four instruments met a priori consensus criteria for inclusion: PedsQL multidimensional fatigue scale for “fatigue”; PedsQL gastrointestinal symptom scales for “gastrointestinal”; PedsQL cognitive functioning scale for “neurocognitive” and EQ-5D for “physical functioning”. Despite proposing outcome measurement instruments for the remaining three core outcomes (“cardiovascular”, “post-exertional malaise”, “work/occupational and study changes”), a consensus was not achieved. Our international, consensus-based initiative presents a robust framework for evaluating post-COVID-19 condition in children and young people in research and clinical practice via a rigorously defined COS and associated COMS. It will aid in the uniform measurement and reporting of relevant health outcomes worldwide.

Details

OriginalspracheEnglisch
Aufsatznummer2301761
FachzeitschriftEuropean Respiratory Journal
Jahrgang63
Ausgabenummer3
PublikationsstatusVeröffentlicht - März 2024
Peer-Review-StatusJa

Externe IDs

PubMed 38359962

Schlagworte

ASJC Scopus Sachgebiete