From: Co-production of a feasibility trial of pacing interventions for Long COVID
Discussions/feedback | Impacts and outcomes of coproduction | |
---|---|---|
Study objectives | Expressed preferences to evaluate pacing resources Utility of selected resources Practical approaches to pacing | Informed the following study objectives: explore pacing interventions, acceptability and adherence assess overall intervention fidelity |
Eligibility criteria | Should eligibility criteria be restricted to fatigue given that pacing can positively impact other symptoms? Concluded that pacing may not be relevant to everyone with Long COVID since there are symptoms that pacing does not address (e.g., anosmia) Eligibility screening needs to be brief and capture fatigue that impacts daily activities | Included a single screening question for fatigue as part of the eligibility criteria |
Suggested translating recruitment and study materials to increase inclusivity of the study | After exploring options for translation, we were unable to meet this request as the intervention resources were all in English and some were not possible to translate such as the app Although translation was considered during intervention selection, most intervention options were only available in English The team agreed this was an important consideration for future work | |
Recruitment | Primary recruitment strategy was advertisements on social media Recognised that this strategy was not sufficiently inclusive and there is a need for additional approaches to recruitment in the community | A community recruitment strategy was developed based on suggestions from patient partners, including local radio, community groups (both Long COVID and general) and community organisations such as churches Patient partners reached out through their local networks and contacts (both Long COVID and general) In addition, the social media advertisement was edited to include “do you know anyone with Long COVID?” to increase reach through family/friends A question was included to identify where people were recruited from as part of the feasibility outcomes |
Data collection | Conducted usability testing of the Aparito Atom5™ platform | Provided feedback on the functionality and design of the platform |
Outcomes | Selecting a primary outcome for a definitive trial was discussed Expressed the importance of quality of life, which was considered more important than a fatigue score | Multiple patient-reported outcome measures were selected, including symptom burden [17], quality of life, fatigue and psychological impairment One of the objectives of the feasibility study will be to select a primary outcome for a definitive trial using both qualitative and quantitative data (e.g., data completeness) |
Intervention selection | See work package 1: potential pacing resources were reviewed and tested | A decision was made to include a range of media formats (e.g., video, app, book) The three pacing resources that formed the intervention arms were all selected by patient partners |
Control arm | There is no “usual care” for Long COVID. Therefore, patient partners were consulted on defining the comparator (control) arm | It was agreed to provide the control group with a link to the NHS website “Your COVID recovery” (https://www.yourcovidrecovery.nhs.uk) as this was considered the closest to “usual care” |