Post Acute COVID-19 Quality of Life (PAC-19QoL) Tool Development and Patient Registry (PAC-19QoLReg)

This observational study will be conducted in two phases:

Phase 1 - the development of a post-COVID-19 patient reported quality of life measure Phase 2 - the longitudinal completion of the quality of life tool by post-COVID-19 patients each month for 12 months All participants will complete an online informed consent form and a demographic questionnaire at the start of their involvement with the study Phase 1 The study will recruit a minimum of 30 participants and a maximum of 60 participants, 10-20 across three groups: those who were not hospitalised; those who were hospitalised but not in intensive care units; and those who were hospitalised and in intensive care units. Investigators will take the first 10-20 participants who match in each group. If contact is received from participants but their group is already full they will be asked if they are still be happy to participate in phase 2 and an offer to contact them when that commences will be made.

Firstly, a novel method (Jandhyala Method) will be used to elicit post-COVID-19 patients' preferences for a post-COVID-19 quality of life tool. Participants will do this by completing an Awareness Round survey, this means using free-text responses to ask participants about the areas of their lives impacted by COVID-19 and those areas they see as most important to their quality of life. The research team will collate and code these free text responses then create a comprehensive list of all of those deemed important to participants who will then be sent a Consensus Round survey to ask how far they agree or disagree with the inclusion of those items in a quality of life tool. Researchers will then collate this information, group it into relevant domains and develop a weighting tool to be sent to participants to ask them to rate the relevant importance of the different areas to be included, which will be used to create weighted domain and item scores to be used in a final quality of life tool. We expect for the Awareness round surveys to be completed within a one month time period and then two weeks will be allocated for the research team to analyse and finalise the Consensus round survey; the Consensus round survey will then be open for two weeks, with prompting to participants after one week if not completed. The research team will then have a further two weeks to complete the weighting tool and participants will be given a further two weeks to complete this. At this stage the research team will have a further two weeks to finalise the Post-COVID-19 quality of life tool and then phase 2 will begin.

In summary:

1. Awareness round online survey (hosted on Survey Monkey) - asking for areas of life which the participants feel have been impacted by COVID-19, including details and examples of those impacts