RecruitingOBSERVATIONAL

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

This study aims to develop a new tool to understand how COVID-19 impacts people's quality of life long after they've recovered. There isn't currently a good way to measure this, especially one that includes what patients themselves feel is important. If you had COVID-19, this study invites you to share your experiences through online surveys. Your answers will help shape a new questionnaire. Later, more participants will be asked to complete this new questionnaire once a month for a year. This research is important to better understand and support people dealing with long-term effects of COVID-19.

At a glance

Status

Recruiting

Sponsor

Medialis Ltd.

Enrolment target

100

Start

07 Oct 2020

Estimated completion

01 Oct 2028

Covid19

What is this study about?

Many people who have had COVID-19 find that it affects their health and daily life for a long time afterwards. But currently, doctors and researchers don't have a good way to measure exactly how COVID-19 impacts a person's quality of life, especially in a way that truly reflects what matters most to those who have been through it. This study aims to change that.

Researchers want to create a brand new questionnaire, or 'tool', specifically designed to understand the quality of life for people after they've had COVID-19. To make sure this tool is really useful, they want to hear directly from people who have experienced COVID-19. They will ask participants what aspects of their life have been affected and what they feel is most important to measure.

The study has two main parts. First, a small group of people who have had COVID-19 will complete some online surveys to share their views on what should be included in this new quality of life tool. Their feedback will help build the questionnaire. In the second part, more people will be invited to complete this finished questionnaire once a month for a year. This will help researchers see how people's quality of life changes over time. Your participation could make a real difference in how future care for people with long-term COVID-19 effects is understood and improved.

Key takeaways

Help create a new tool to understand long-term COVID-19 effects.
Share your experiences with COVID-19 through online surveys.
No new medicines or treatments involved.
Participate from home, no clinic visits needed.
Your input could improve future patient care.
You can stop participating at any time.

Who may be eligible?

To join this study, you need to be at least 18 years old and able to read and write in English. Most importantly, you must have definitely had COVID-19. This means either you had a positive test for the virus itself, or a positive antibody test afterwards. In the later stage of the study, a doctor’s diagnosis of COVID-19 will also be accepted.

You also need to be able to give your full agreement to take part and follow the study's instructions. If you don't meet these requirements, for example, if you're under 18, can't communicate in English, or haven't had a confirmed COVID-19 infection, then unfortunately you wouldn't be able to join.

There are slightly different requirements for the first stage (where you help create the tool) and the second stage (where you use the tool). The research team will guide you on which stage you might be suitable for based on your background and when you get in touch.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 18 years old or older?
Have you had a confirmed COVID-19 infection (positive test or antibody test)?
Can you read, write, and speak English well?
Are you comfortable completing online surveys?
Can you provide your consent to join the study?

Answer every question to see your result.

What does participation involve?

If you take part in this study, you won't be given any new medicines or treatments. Your involvement will mainly be through completing online surveys from your home.

In the first phase, you'll complete three online surveys. The first survey asks you in your own words what areas of your life COVID-19 has affected. The second survey will ask you to agree or disagree with a list of statements based on what everyone else has said. The third survey will ask you to rate how important different areas are. Together, these help create the new quality of life tool. This part involves completing these surveys over a period where you have time to think about your answers.

If you join the second phase (or continue from the first phase), you'll be asked to fill out the new COVID-19 quality of life questionnaire once a month for a total of 12 months. Everyone will also complete one quick survey at the start about their background information, like age and general health. All parts of the study are completed online, so there are no hospital visits.

Potential risks and benefits

A potential benefit of taking part is helping to create a vital new tool that will improve our understanding of long-term COVID-19 effects, potentially leading to better support for patients in the future. Sharing your experiences might also be valuable for you. The main risk involves the time commitment, as you'll need to complete a series of online surveys. Some questions might make you reflect on your experience with COVID-19, which could be emotionally challenging for some. You are free to stop participating at any time without giving a reason, and this won't affect your medical care in any way.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

Medialis
Verified postcode
Oxford, United Kingdom· Recruiting

Common questions

What is the main goal of this study?

The main goal is to create a new, patient-friendly questionnaire to measure how COVID-19 affects people's quality of life in the long term.

Do I have to go to a hospital or clinic?

No, all parts of this study, including surveys, will be completed online from your own home.

Will I be given any medicine in this study?

No, this study is about understanding experiences through surveys, not about testing new medicines or treatments.

How long will I need to be involved?

If you join the first phase, it involves three surveys. If you join the second phase, you'll complete monthly surveys for 12 months, plus an initial background survey.

What happens if I change my mind?

You are free to leave the study at any time, for any reason, without it affecting your medical care.

How to find out more

Omolade Femi-Ajao, PhD

research@medialis.co.uk +447502228066 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.