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

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.

Sustaining connections: feasibility and impact of long-term virtual patient engagement

“…The five VAV domains of trust, self-awareness, empathy, relationship-building, and education and communication provided specific areas for researchers to focus on when planning virtual patient engagement activities and helped build group cohesion and trust, despite not having face-to-face interaction. Consistent with previously published literature on virtual engagement [ 8 , 10 – 12 ], we also identified benefits specific to virtual engagement such as allowing people from larger geographic areas and with varying work and family obligations to participate in the project and enabling people who live with persistent pain to join meetings even on days when they were having increased pain, which would not have been possible if meetings were in-person.…”

“…COVID-19 changed how many researchers engage patients, with more traditional in-person interaction shifting to remote and virtual settings [ 8 ]. Literature on virtual patient engagement is still emerging [ 9 ], but documented benefits include enabling people from larger geographic areas to participate, greater accessibility of participation for people with long-term health conditions, and avoiding the time, cost, and stress of traveling to an in-person meeting [ 8 , 10 – 12 ]. Challenges include differences in familiarity, comfort, and access to technology [ 8 , 12 ], building and maintaining relationships when interactions are solely virtual [ 8 , 9 , 13 – 15 ], and sustaining active participation from patients over time [ 12 , 16 ].…”