The FADA* Survey

Participant Information Leaflet (PIL) for The FADA Survey: Life after Covid-19, how are you now?

Thank you to everyone who took part in The FADA Survey- we are very grateful for your time.

The Survey has now closed and we will not be texting any more invites. We look forward to sharing our findings.

 

Following your COVID-19 illness, HSE Public Health wants to know “how are you now?” and has launched the *Follow-up After Disease Acquisition (FADA) Survey to find out.

Every experience is important. So we need to hear from you whether you had a quick recovery from COVID-19, were sick for some time after or are still experiencing symptoms.

  1. We are inviting some people who have tested positive for COVID-19 during the pandemic, and who are living in Longford, Westmeath, Laois, Offaly, Kildare, West Wicklow and South Dublin (HSE Public Health Area B) to complete an online survey. If you get an invitation, please consider clicking the link to do the survey.
  2. Even if you are fully better from your COVID-19 infection, we want to hear from you. Please click the link and consider doing the survey. The survey will take less than 5 minutes to complete if you had a swift recovery from COVID-19.
  3. We know that many people in Ireland are living with Long COVID. If this is you, you are also included in the survey. We know you may be struggling with your health. We believe you. We want to know more about the health challenges you are facing so we can understand the health services you need. Let us hear your voice so that we can shape the care you receive in the future. The survey will take you between 10 and 20 minutes to complete.
  4. If you click out of the survey, your progress is saved and you can rejoin by clicking the link in the text that was sent to you.

By looking at the differences between people who are fully recovered and those who have Long COVID, we may be able to find risk factors that make some people more likely to have health problems after COVID-19. We might find ways to protect them in the future. By doing the FADA survey you will help us understand how people recover from COVID-19, and you will help us shape the health service, leading to more care for people living with Long COVID.

To accurately estimate how many people recover from COVID-19, it is not possible for people to self-select into this survey.

As we already have your COVID-19 record, the FADA survey questions will not ask you for identifying information like your name, date of birth or telephone number.
We will not ask for any bank details or credit/debit card information.

Background

On 11th March 2020 the World Health Organisation declared the COVID-19 outbreak to be a pandemic. The next day, in Ireland, it was announced that schools, childcare facilities and colleges would be closing with immediate effect. Two weeks later, on 27th March 2020, the Taoiseach implored everyone residing in Ireland to “stay home” other than for certain situations such as food shopping and attending medical appointments. All “non-essential” workers were asked to work from home. Over the months that followed, the spread of COVID-19 was unprecedented.

It is safe to say that there are very few households in Ireland that have not experienced COVID-19 over the past number of years. As of 24th January 2023 there have been 1,700,253 confirmed cases of COVID-19 notified to Departments of Public Health in Ireland. However, this is an under-representation given that testing of the majority of people with symptoms is no longer recommended. Since the start of the pandemic in Ireland there have been almost 8,500 deaths from COVID-19.

One of the unique things about COVID-19 is that the symptoms can range from very mild to severe. Some people don’t get symptoms at all but can still spread the virus.

There are also differences in how people recover from COVID-19. Most people with COVID-19 infections recover within 4 weeks. But some people experience COVID-19 symptoms or health problems for more than 4 weeks after they are diagnosed. These health problems are often called “post COVID-19 condition” or “Long COVID”. We want to understand more about people who recover quickly and people who are sick for longer because of their COVID-19 infection.

What is Long COVID and what are its symptoms?

Most COVID-19 infections get better after 4 weeks. “Long COVID” means your symptoms carry on for 4 weeks or more, even after your COVID-19 infection has cleared. Long COVID can also mean that you are having new health problems after your COVID infection has resolved. 

Long COVID can cause different problems that change over time. The most common symptoms of Long COVID are:

  1. Lung or chest problems – like breathlessness, cough or chest pain
  2. Fatigue or feeling tired all the time
  3. Pain – where any part of your body can hurt
  4. Brain problems – like finding it hard to focus, getting headaches, feeling dizzy or having problems sleeping
  5. Stomach problems – like feeling pain in your tummy, feeling sick, having diarrhoea or loose or watery poo, having no appetite, losing weight.
  6. Mental health problems – like feeling more depressed or worried than usual
  7. Skin problems – like unusual rashes
  8. Ear nose and throat problems – like a change in your sense of taste or smell, earaches, sore throat or ringing in your ears.

The FADA Survey - How are you now?

To help us understand more about how people are recovering from COVID-19, Public Health is launching the FADA Survey. FADA stands for “Follow-up After Disease Acquisition.” Fada is also the Irish word for “long”. The road through the COVID-19 pandemic has been a long one (a “bóthar fada”) for all of us. We know for some people this journey has been made even longer by the health problems they continue to experience long after their infection has resolved.

We will be inviting some people who have tested positive for COVID-19 during the pandemic, and who are living in HSE Public Health Area B, to complete an online survey. This Area covers Longford, Westmeath, Laois, Offaly, Kildare, West Wicklow and South Dublin.

If you are invited to complete the survey we would be very grateful if you would consider doing so, even if you are feeling well.

This survey will help us to understand:

  1. How you are now
  2. How you recovered from COVID-19 infection
  3. The risk factors that might make Long COVID more likely
  4. The health services that people living with prolonged COVID illness or Long COVID might need. 

We will be contacting people under the:

This ensures compliance with GPDR (General Data Protection Regulation).

Will the FADA Survey be extended to other parts of the country?

We may later extend the survey to a wider area depending on responses and findings from HSE Public Health Area B.

Can I self-select or offer to participate in the FADA Survey?

This is not possible. To accurately estimate how many people recover from COVID-19, people cannot offer to take part in FADA.

Why we need to understand more about Long COVID and prolonged COVID illness

As we plan for the future of healthcare in Ireland, we need to deepen our understanding of how people recover from COVID-19, with a particular focus on those who do not recover after a short period of illness. By improving our understanding, we can help people who continue to live with the effects of COVID-19 after their initial infection has resolved.

It is important that even if you have now fully recovered from your COVID-19 infection that you answer the survey. Our survey will help us to understand the health needs of people living with prolonged COVID-19 illness, or Long COVID, compared to the rest of the population. This will allow us to plan and shape our health service to make sure these health needs, including psychological and social needs, are being met.

Recovery from COVID-19 is complicated, for some this may be due to the fact that their initial illness meant that they were very unwell, perhaps in ICU, meaning that they need to rehabilitate following their illness. For others, even after the acute illness has passed, new and debilitating symptoms can emerge. These symptoms can affect different parts of the body, can come and go, and can vary in severity. There is no test to diagnose Long COVID or prolonged COVID illness. So it is important that we can predict the treatment and support that people living with prolonged COVID illness might need, based on their lived experience.

If I am contacted by the FADA Survey do I have to take part?

No. If you decide not to take part you can ignore or delete the text messages. This will not affect your future medical care or rights in any way.

If you change your mind while completing the survey, you can stop at any time. The answers you did provide will be included in our analysis unless you email us at fada.survey@hse.ie to request that they are removed. You do not have to give us any reason and your rights will not be affected.

The HSE’s previous contact with you during the pandemic was done under the Infectious Disease Regulations 1981. The answers you give to the survey will be added to your COVID record, held securely by Public Health Area B/HSE. This will be done by code and your name will not be used. Individual cases of Long COVID will not be identified or followed-up. 

What does taking part involve?

If you are invited to take part, the FADA team will send you 3 text messages:

  1. The first text message will tell you that you have been selected to take part in the FADA Survey.
  2. The second text message will give you a link to this website as we would like everyone to read this information before they do the survey.
  3. Your third message will have a link in it. This link will take to you an online survey. The survey is hosted on the Qualtrics website. This is a secure website.

If you don’t click the link to take part, we may send you reminder texts before the survey closes.

What kind of questions will I be asked?

You will be asked questions about:

  • when you had COVID-19
  • how your health is now, including any symptoms you had recently
  • if COVID-19 had an impact on your health
  • health services used during your COVID illness
  • your COVID vaccination history
  • social and economic factors affecting your life

These questions will give us an understanding of how you are recovering from COVID-19. The survey will take between 10 and 20 minutes to complete.

We hope to use the information to help us to estimate how common Long COVID is in the community (the prevalence rate of Long COVID). It will also help us to understand how people who had COVID-19 are feeling now. For us to understand this, it is important to know about people who feel fine today as well as those who are still feeling unwell.

How does this survey benefit me?

The FADA survey gives you a chance to share your lived experience with us, to help us to understand more about how people recover from COVID-19. There are no direct benefits to taking part. But by sharing your experience you are helping us explore how people recover from COVID-19. You will help us learn more about the symptoms people have as they recover.

Even if you are fully better now, adding your voice to the FADA survey will be really helpful. If we are able to look at differences between people who are fully recovered and those who have Long COVID, we may be able to see who is most at risk of developing ongoing health problems. We might find ways to protect them in the future. 

By completing the FADA survey not only are you helping us understand how people recover from COVID-19, you are also helping to shape the health service as we understand more what care people with Long COVID need. We hope this will lead to more care for people experiencing long COVID.

Are there risks in taking part?

There is very little risk associated with completing the survey.

The questions in the survey will focus on the COVID-19 infections you had, and how your health is now.  

It is possible that you may have experienced loss or trauma during the pandemic. While we don't ask about this in the survey, we do know that your experiences over the last three years may be reflected in how you are feeling today. Please remember that you can stop answering at any time and close the survey.

If you do feel distressed or worried about your mental health, whether related to your experiences with COVID or not, the HSE website yourmentalhealth.ie has a list of supports and services available. Or if you prefer, you can Freephone the YourMentalHealth Information Line on 1800 111 888, any time day or night.

Is it safe to click the link for the FADA survey?

Yes, it is safe to click on our link.

Many of us are wary of clicking on links in text messages. There are so many scams and “phishing” texts around, it can be hard to know what is genuine and what is not.

As we already have your COVID-19 record, the FADA survey questions will not ask you for identifying information like your name, date of birth or telephone number. 

Be assured that the FADA survey questions will not ask you for bank details or credit/debit card information.

Who is carrying out this survey?

The FADA survey is being run by HSE Public Health. Our team includes doctors and researchers from HSE Public Health Area B and the HSE Health Intelligence Unit. We are working with the HSE Long COVID Model of Care Implementation Team to design and provide the optimum Long-COVID service.

Whom can I contact if I have any concerns about the survey?

You can contact our investigation team by sending an email to fada.survey@hse.ie or calling 057 9359847 during office hours.   

Please note that to accurately estimate how many people recover from COVID-19, it is not possible for people to self-select into this survey.            

Will my taking part in this survey be kept confidential?

Yes. All information that is collected during the research will be kept strictly confidential. The data will be stored in line with HSE policy.

What is the relevant legislation for this survey?

What will happen to the results of this survey?

The results will be used to help make decisions on Long COVID care that reflect the needs of those with the illness.

The general health of the population will also be described using these data. Articles reporting and discussing the results will be published both internally, to inform service design within the HSE, and in academic journals. Results will also be presented and discussed at research conferences. General health data will be used to describe the health status of the population for Area B during this pandemic. You will not be identified in reports, presentations or articles. 

Who has ethically reviewed the project?

The Research Ethics Committee in the Royal College of Physicians Ireland provided a favourable ethics review.

Future uses of the data

The information provided in this survey may be used in the future to design healthcare provision for the general population.

Some people with Long COVID may be contacted in the future to ask them to participate in Long COVID health studies. However, we would contact them to look for permission to share their contact details for such work.

What services are available to people who feel they have Long COVID, what should they do if feeling unwell?

If you are feeling unwell and think you might have Long COVID, the first thing you should do is speak with your GP. This is because sometimes other health problems can cause symptoms that are similar to Long COVID. Your GP will speak to you about your symptoms and may need to examine you. 

After this your GP might:

  • Advise you to have some tests to rule out other causes for your symptoms
  • Give you advice about how to manage your symptoms at home
  • Link you in with other services in the community like physiotherapy, your public health nurse, a community dietitian or speech and language therapist
  • Refer you to a service that specialises in the symptoms that you have

If you were admitted to hospital with your COVID-19 infection, the team of doctors who looked after you in hospital might follow up with you in their Outpatients Clinic.

If you feel distressed or worried about your mental health, whether related to your experiences with COVID or not, the HSE website yourmentalhealth.ie has a list of supports and services available. Or if you prefer, you can Freephone the YourMentalHealth Information Line on 1800 111 888, any time day or night.

What if I feel upset or distressed by some of the questions?

The questions in the survey will focus on the COVID-19 infections you had, and how your health is now.  

It is possible that you may have experienced loss or trauma during the pandemic. While we don't ask about this in the survey, we do know that your experiences over the last three years may be reflected in how you are feeling today. Please remember that you can stop answering at any time and close the survey.

If you do feel distressed or worried about your mental health, whether related to your experiences with COVID or not, the HSE website yourmentalhealth.ie has a list of supports and services available. Or if you prefer, you can Freephone the YourMentalHealth Information Line on 1800 111 888, any time day or night.

 

Last updated: 23 January 2024