Table 4 Summary of patient partners input into the design and delivery of the feasibility study

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”