Vaccine perceptions in inflammatory conditions

November 2022

Why did we do this study?

The immune system protects the body from infection, it attacks germs and helps keep us healthy. In the UK, around one in fifty adults have a condition where the immune system is too active and mistakenly attacks parts of the body. This can cause damage to the joints, gut, skin or blood vessels. These conditions can be treated with medicines that dampen down the immune system. But, this means that someone taking them has a higher chance of getting seriously unwell if they get flu, pneumonia or COVID-19. Although the chances of this happening can be reduced with vaccines, many people on these medicines do not get vaccinated. The reasons for this are not well understood.

Our aim in this study was to find out why some people with these conditions and who take medicines that dampen their immune system choose to get vaccinated for flu, pneumonia and COVID-19, while others do not.

Who did we talk to?

Between November 2021 and January 2022, we interviewed 20 people with different conditions – rheumatoid arthritis, Crohn’s disease, vasculitis, lupus, ankylosing spondylitis, and psoriatic arthritis.

What did we find?

We found that there are many reasons for being vaccinated or not. This varied by the type of vaccine, but not from condition to condition. The key reasons are listed below.

Reasons for being vaccinated

For all:

Knowing that they had a high risk of getting seriously unwell if they caught flu, pneumonia or COVID-19.
Believing that vaccines will keep them well. We found it was important to people that they could keep healthy having been ill with their condition.
Seeing that these vaccines are endorsed by charities working on behalf of these patients.

For flu and pneumonia only:

Knowing that they were eligible for these vaccines.
Getting a recommendation from their doctor or nurse.
Getting a direct invitation to be vaccinated, by text message or letter.

We found that recommendations and invitations were often given for flu, but not pneumonia. Adverts to be vaccinated for flu were also seen more often than for pneumonia.

For COVID-19 only:

The focus on COVID-19 and its threat in the news, and seeing how many people were catching it.
Feeling that being vaccinated would help others.
The go ahead from a doctor or nurse that the new vaccines were suitable for their condition.
The mass vaccination programme with invitations being sent to get vaccinated when required to do so, and on more than one occasion. Plus, good availability of appointments.
A doctor or nurse checking to see if they had been vaccinated.
Seeing news reports that the vaccines were reducing how many people were getting seriously unwell from COVID-19.
Hearing from people with the same condition that the vaccines did not cause it to flare-up.

Reasons for not being vaccinated

For all:

Their condition not being stable, because of current symptoms or taking new medicines.
Believing that a vaccine could cause a flare-up of their condition.

For flu and pneumonia only:

Not knowing that they were eligible for these vaccines.
No recommendation from their doctor or nurse.
No direct invitation to be vaccinated.
Adverts for vaccinations did not include them as a group who were eligible for these vaccines.
Believing they had a low chance of getting seriously unwell from flu and pneumonia, so there were no benefits to taking these vaccines.

What could improve uptake?

We recommend that the benefits and safety of vaccination are addressed with patients in hospital and GP appointments. Those on medicines that dampen the immune system are not routinely included in direct invitation for vaccination and so they could be considered for this. People that take these medicines could also be listed in the eligibility criteria for vaccination in television, newspaper and pharmacy adverts.

Published Paper

For an in depth summary of the study, please click here to access the paper published in the PLOS One journal.