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

Plain English summary The World Health Organisation defines Long COVID as a condition which impacts people 3 months after they first had COVID-19. Some of the symptoms that characterise Long COVID symptoms include fatigue, breathlessness and brain fog. These symptoms have a major impact on people’s...

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Bibliographic Details
Main Authors: Grace M. Turner, Christel McMullan, Olalekan Lee Aiyegbusi, Sarah E. Hughes, Anita Walker, Felicity Jeyes, Yvonne Adler, Amy Chong, Lewis Buckland, David Stanton, Elin Haf Davies, Shamil Haroon, Melanie Calvert
Format: Article
Language:English
Published: BMC 2023-03-01
Series:Research Involvement and Engagement
Subjects:
Online Access:https://doi.org/10.1186/s40900-023-00429-2
Description
Summary:Plain English summary The World Health Organisation defines Long COVID as a condition which impacts people 3 months after they first had COVID-19. Some of the symptoms that characterise Long COVID symptoms include fatigue, breathlessness and brain fog. These symptoms have a major impact on people’s health and quality of life. Today, over 2 million people in the United Kingdom suffer from Long COVID and there is a lack of drugs and non-drugs treatment. However, some non-drugs treatments which aim to manage fatigue in other conditions, such as pacing, could be used with people with Long COVID. In this paper, we report how we co-produced a study which tested whether or not it is feasible for people who have Long COVID to use a pacing resource and report their symptoms using an electronic platform. After a meeting to review existing non-drugs treatments, the research team and a group of patient partners agreed on co-developing a clinical trial platform to test different pacing resources. The research team then met with the patient partners twice a week to co-design the study during which people with Long COVID will use the pacing resources and report their symptoms. They also co-designed the study documents and how to report its results. Co-producing a study with patient partners was effective and influenced important aspects of the study.
ISSN:2056-7529