Co-production of a feasibility trial of pacing interventions for Long COVID

Grace Turner; Christel McMullan; Olalekan Lee Aiyegbusi; Sarah Hughes; Anita Walker; Felicity  Jeyes; Yvonne  Adler; Amy  Chong; Lewis  Buckland; David E.   Stanton; Elin Haf  Davies; Shamil Haroon; Melanie Calvert

doi:10.1186/s40900-023-00429-2

Co-production of a feasibility trial of pacing interventions for Long COVID

Grace Turner, Christel McMullan^*, Olalekan Lee Aiyegbusi, Sarah Hughes, Anita Walker, Felicity Jeyes, Yvonne Adler, Amy Chong, Lewis Buckland, David E. Stanton, Elin Haf Davies, Shamil Haroon, Melanie Calvert

^*Corresponding author for this work

Applied Health Research

Research output: Contribution to journal › Article › peer-review

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Abstract

Background
The high incidence of COVID-19 globally has led to a large prevalence of Long COVID but there is a lack of evidence-based treatments. There is a need to evaluate existing treatments for symptoms associated with Long COVID. However, there is first a need to evaluate the feasibility of undertaking randomised controlled trials of interventions for the condition. We aimed to co-produce a feasibility study of non-pharmacological interventions to support people with Long COVID.

Methods
A consensus workshop on research prioritisation was conducted with patients and other stakeholders. This was followed by the co-production of the feasibility trial with a group of patient partners, which included the design of the study, the selection of interventions, and the production of dissemination strategies.

Results
The consensus workshop was attended by 23 stakeholders, including six patients. The consensus from the workshop was to develop a clinical trial platform that focused on testing different pacing interventions and resources. For the co-production of the feasibility trial, patient partners selected three pacing resources to evaluate (video, mobile application, and book) and co-designed feasibility study processes, study materials and undertook usability testing of the digital trial platform.

Conclusion
In conclusion, this paper reports the principles and process used to co-produce a feasibility study of pacing interventions for Long COVID. Co-production was effective and influenced important aspects of the study.

Original language	English
Article number	18
Journal	Research Involvement & Engagement
Volume	9
Issue number	1
DOIs	https://doi.org/10.1186/s40900-023-00429-2
Publication status	Published - 30 Mar 2023

Keywords

Long COVID
Post Covid-19 condition
Post-acute sequelae of SARS-CoV-2 infection (PASC)
Coproduction
Pacing
Fatigue
Feasibility
Patient and public involvement

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10.1186/s40900-023-00429-2Licence: Creative Commons: Attribution (CC BY)

TurnerGM2023Co-productionFinal published version, 1.2 MBLicence: Creative Commons: Attribution (CC BY)

Therapies for Long COVID in non-hospitalised individuals: From symptoms, patient-reported outcomes and immunology to targeted therapies (The TLC Study)
Calvert, M., Gkoutos, G., Wraith, D., Nirantharakumar, K., Sapey, E., Hughes, S., Haroon, S., McMullan, C., Jackson, L., Cruz Rivera, S., Marwaha, S., Turner, G., Chandan, J., Marshall, T., Aiyegbusi, L., Lord, J. & Denniston, A.
NIHR
1/03/21 → 29/03/24
Project: Other Government Departments

Cite this

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title = "Co-production of a feasibility trial of pacing interventions for Long COVID",

abstract = "BackgroundThe high incidence of COVID-19 globally has led to a large prevalence of Long COVID but there is a lack of evidence-based treatments. There is a need to evaluate existing treatments for symptoms associated with Long COVID. However, there is first a need to evaluate the feasibility of undertaking randomised controlled trials of interventions for the condition. We aimed to co-produce a feasibility study of non-pharmacological interventions to support people with Long COVID.MethodsA consensus workshop on research prioritisation was conducted with patients and other stakeholders. This was followed by the co-production of the feasibility trial with a group of patient partners, which included the design of the study, the selection of interventions, and the production of dissemination strategies.ResultsThe consensus workshop was attended by 23 stakeholders, including six patients. The consensus from the workshop was to develop a clinical trial platform that focused on testing different pacing interventions and resources. For the co-production of the feasibility trial, patient partners selected three pacing resources to evaluate (video, mobile application, and book) and co-designed feasibility study processes, study materials and undertook usability testing of the digital trial platform.ConclusionIn conclusion, this paper reports the principles and process used to co-produce a feasibility study of pacing interventions for Long COVID. Co-production was effective and influenced important aspects of the study.",

keywords = "Long COVID, Post Covid-19 condition, Post-acute sequelae of SARS-CoV-2 infection (PASC), Coproduction, Pacing, Fatigue, Feasibility, Patient and public involvement",

author = "Grace Turner and Christel McMullan and Aiyegbusi, {Olalekan Lee} and Sarah Hughes and Anita Walker and Felicity Jeyes and Yvonne Adler and Amy Chong and Lewis Buckland and Stanton, {David E.} and Davies, {Elin Haf} and Shamil Haroon and Melanie Calvert",

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AU - McMullan, Christel

AU - Aiyegbusi, Olalekan Lee

AU - Hughes, Sarah

AU - Walker, Anita

AU - Jeyes, Felicity

AU - Adler, Yvonne

AU - Chong, Amy

AU - Buckland, Lewis

AU - Stanton, David E.

AU - Davies, Elin Haf

AU - Haroon, Shamil

AU - Calvert, Melanie

PY - 2023/3/30

Y1 - 2023/3/30

N2 - BackgroundThe high incidence of COVID-19 globally has led to a large prevalence of Long COVID but there is a lack of evidence-based treatments. There is a need to evaluate existing treatments for symptoms associated with Long COVID. However, there is first a need to evaluate the feasibility of undertaking randomised controlled trials of interventions for the condition. We aimed to co-produce a feasibility study of non-pharmacological interventions to support people with Long COVID.MethodsA consensus workshop on research prioritisation was conducted with patients and other stakeholders. This was followed by the co-production of the feasibility trial with a group of patient partners, which included the design of the study, the selection of interventions, and the production of dissemination strategies.ResultsThe consensus workshop was attended by 23 stakeholders, including six patients. The consensus from the workshop was to develop a clinical trial platform that focused on testing different pacing interventions and resources. For the co-production of the feasibility trial, patient partners selected three pacing resources to evaluate (video, mobile application, and book) and co-designed feasibility study processes, study materials and undertook usability testing of the digital trial platform.ConclusionIn conclusion, this paper reports the principles and process used to co-produce a feasibility study of pacing interventions for Long COVID. Co-production was effective and influenced important aspects of the study.

AB - BackgroundThe high incidence of COVID-19 globally has led to a large prevalence of Long COVID but there is a lack of evidence-based treatments. There is a need to evaluate existing treatments for symptoms associated with Long COVID. However, there is first a need to evaluate the feasibility of undertaking randomised controlled trials of interventions for the condition. We aimed to co-produce a feasibility study of non-pharmacological interventions to support people with Long COVID.MethodsA consensus workshop on research prioritisation was conducted with patients and other stakeholders. This was followed by the co-production of the feasibility trial with a group of patient partners, which included the design of the study, the selection of interventions, and the production of dissemination strategies.ResultsThe consensus workshop was attended by 23 stakeholders, including six patients. The consensus from the workshop was to develop a clinical trial platform that focused on testing different pacing interventions and resources. For the co-production of the feasibility trial, patient partners selected three pacing resources to evaluate (video, mobile application, and book) and co-designed feasibility study processes, study materials and undertook usability testing of the digital trial platform.ConclusionIn conclusion, this paper reports the principles and process used to co-produce a feasibility study of pacing interventions for Long COVID. Co-production was effective and influenced important aspects of the study.

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KW - Post Covid-19 condition

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KW - Fatigue

KW - Feasibility

KW - Patient and public involvement

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JO - Research Involvement & Engagement

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Co-production of a feasibility trial of pacing interventions for Long COVID

Abstract

Keywords

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Projects

Therapies for Long COVID in non-hospitalised individuals: From symptoms, patient-reported outcomes and immunology to targeted therapies (The TLC Study)

Cite this