New study on the day-to-day experiences and challenges of living with SLE – recruiting now

New study on the day-to-day experiences and challenges of living with SLE – recruiting now

A new study is investigating the support needs of people with SLE. The researchers hope to use this information to develop a “toolkit” for people with SLE.


Systemic Lupus Erythematosus (SLE) can have an impact on a person’s mental health, day-to-life, relationships, and work life, beyond simply the physical symptoms. This is called a “psychosocial” impact. A previous study by the same research team highlighted that people with lupus would like support with this impact, as well as there being a need for better understanding and awareness about these challenges among healthcare professionals. There can be big differences in the amount of, and the type of, psychosocial support people are offered in their local rheumatology departments, and there isn’t a lot of research about what kind of psychosocial support may be best.

What is this study investigating?

This study is being conducted by researchers at the University of the West of England (UWE), in Bristol. They are asking people living with lupus, and healthcare professionals who support people with lupus, about the experiences and challenges of living with lupus and how healthcare teams can best provide that support. There are three parts to the study:

1. An online survey of the experiences of people with lupus.
2. Interviews with a smaller group of people with lupus to explore some of the ideas in the survey in more depth.
3. An online survey of healthcare professionals who work with people with lupus.

They are hoping the information they collect will help them to identify the support needs of people with lupus, and what the healthcare teams need to provide that support. They plan to use this to develop a supportive ‘toolkit’ for people with lupus.

A cartoon of a woman standing in front of a giant phone, pressing to answer questions in a surveyWho can take part?

You can take part if you are:

• Living in England
• Aged 18 or over
• Have had a diagnosis of SLE for at least 6 months

If you have a diagnosis of another form of lupus, such as cutaneous lupus, you can only take part if you also have a diagnosis of SLE.

What will happen if I take part?

You will be asked to complete an online survey, which would take roughly 30 minutes. You can also request a copy in the post if you would prefer to complete it on paper. All answers to the survey are anonymous.

If you give permission, the researcher may contact you to see if you would be interested in taking part in an interview afterwards.

How do I take part?

You can sign up and complete the survey here.

The deadline for completing the survey is Friday 28th June.

If you have any questions, or if you would like to request a paper copy, you can contact the lead researcher Beatrice Payne at

What if I am a healthcare professional who would like to take part?

As a healthcare professional, you can take part if you are:

• Employed by NHS England
• Work clinically with people with SLE
• Are aged 18 or over

You can be any type of healthcare professional, and can work at a specialist or non-specialist service.

If you would like to participate, the survey link for healthcare professionals is here.

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