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Record W4391845803 · doi:10.1183/13993003.01761-2023

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”

2024· review· en· W4391845803 on OpenAlex
Nina Seylanova, Anastasia S. Chernyavskaya, Natalia Degtyareva, Aigun Mursalova, Ali Ajam, Lin Xiao, Khazhar Aktulaeva, Philipp Roshchin, Polina Bobkova, Olalekan Lee Aiyegbusi, Anbarasu Theodore Anbu, Christian Apfelbacher, Ali A. Asadi‐Pooya, Liat Ashkenazi‐Hoffnung, Caroline L. H. Brackel, Danilo Buonsenso, Wouter De Groote, Janet Dı́az, Daniele Donà, Audrey Dunn Galvin, Jon Genuneit, Helen Goss, Sarah Hughes, Christina Jones, Krutika Kuppalli, Laura A. Malone, Sammie McFarland, Dale M. Needham, Nikita Nekliudov, Timothy R. Nicholson, Carlos R. Oliveira, Nicoline Schiess, Terry Segal, Louise Sigfrid, Claire Thorne, Susanne J. H. Vijverberg, John O. Warner, Wilson Were, Paula Williamson, Daniel Munblit

Why this work is in the frame

A frame that forgets how it found something cannot be audited. These are the routes that admitted this work.

fundA Canadian funder is recorded on the work.
no affNo Canadian affiliation: this work is invisible to an affiliation-only frame.
No Canadian affiliation. An affiliation-only frame, the usual design, would never have seen this work. It is one of the works that make the case for inverting the frame.

Bibliographic record

VenueEuropean Respiratory Journal · 2024
Typereview
Languageen
FieldSocial Sciences
TopicDelphi Technique in Research
Canadian institutionsnot available
FundersNational Center for Immunization and Respiratory DiseasesNational Institute of Allergy and Infectious DiseasesNational Heart, Lung, and Blood InstituteCenters for Disease Control and PreventionPirogov Russian National Research Medical UniversityGreat Ormond Street Institute of Child HealthEuropean Society of Intensive Care MedicineSheffield Children's NHS Foundation TrustUniversitatea de Medicină şi Farmacie "Carol Davila" BucureştiUniversitätsklinikum JenaNational Institutes of HealthUniversità di PisaUniversità degli Studi di ParmaWorld Health OrganizationImperial College Healthcare NHS TrustUniversity College LondonUniversity of SydneyUniversidad de ChileUniversity of QueenslandLietuvos Sveikatos Mokslų UniversitetasImperial College LondonUniversity College CorkKidney Research UKSarcoma UKAnthony NolanLEO PharmaAlder Hey Children's NHS Foundation TrustGilead SciencesMcMaster UniversitySanofiTechnische Universität DresdenNational Institute for Health and Care Research
KeywordsDelphi methodPandemicMedicineSet (abstract data type)Coronavirus disease 2019 (COVID-19)DelphiPsychologyComputer-assisted web interviewingFamily medicineDiseaseComputer scienceBusinessPathology

Abstract

fetched live from OpenAlex

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.

Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.

Full frame distilled prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.

metaresearch head score (Codex)0.105
metaresearch head score (Gemma)0.042
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesMetaresearch, Meta-epidemiology (narrow), Scholarly communication, Research integrity
Consensus categoriesMetaresearch
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Observational · Consensus signal: none
GenreCandidate signal: Review · Consensus signal: Review
Teacher disagreement score0.495
Threshold uncertainty score1.000

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.1050.042
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0010.000
Bibliometrics0.0020.001
Science and technology studies0.0010.001
Scholarly communication0.0010.001
Open science0.0010.001
Research integrity0.0000.004
Insufficient payload (model declined to judge)0.0000.000

Machine scores (provisional)

The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.

Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.

Opus teacher head0.667
GPT teacher head0.640
Teacher spread0.027 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it