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”

Abstract

The COVID-19 pandemic substantially impacted different age groups, with children and young people (CYP) not exempted. Many have experienced enduring health consequences. Presently, there is no consensus on the health outcomes to assess in CYP with post COVID-19 condition. Furthermore, it is unclear which measurement instruments are appropriate for use in research and clinical management of CYP 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 CYP. 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 “Neuro-cognitive” and “EQ5D family” 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 CYP in research and clinical practiceviaa rigorously defined COS and associated COMS. It will aid in the uniform measurement and reporting of relevant health outcomes worldwide.

Experiences of physiotherapists working with adults living with Long COVID in Canada: a qualitative study

“…Furthermore, the diversity of clinical experiences among physiotherapists reflected in the interview data suggests Long COVID clinics may have used variable definitions of Long COVID which resulted in some physiotherapists having experiences working with people who met the WHO definition of Long COVID and others working with people with symptoms from acute COVID-19 persisting less than two months or prior to three months from the onset of COVID-19 (3). Since participants primarily worked with adults and practiced in urban settings in Canada, these study findings may have limited transferability to physiotherapists working with children (who also experience Long COVID) (64,65), practising in other geographical settings, including rural or remote areas or working within different healthcare systems. Future research may explore the experiences of physiotherapists working with diverse patient populations, other countries and healthcare settings in the context of Long COVID.…”