17 June 2024

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PAIN PATH studies

Understanding pain and its management in patients with inflammatory arthritis

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Opportunity to take part in new research to improve pain treatment in people with inflammatory arthritis.

NRAS are working with researchers at Keele University and the Midlands Partnership University NHS Foundation Trust, to undertake two new studies to improve how pain is treated in people with inflammatory arthritis.

Why are the PAIN PATH studies needed?

Inflammatory arthritis, which affects over 1% of adults in England, refers to conditions causing joint inflammation. The most common types are rheumatoid arthritis, psoriatic arthritis, and axial spondyloarthritis. 

Many people with inflammatory arthritis suffer daily pain, which is often treated with strong pain medicines called opioids and gabapentinoids for long periods of time. However, no studies have looked at whether these medicines are helpful when used like this. They also often cause side-effects.  

Other treatments have been shown to help pain, like exercise and talking therapies. However, little is known about how often people with inflammatory arthritis receive these.   

To improve pain for people with inflammatory arthritis, we first need to know how it is currently being treated. This is the focus of the PAIN PATH studies.

What is involved?

The PAIN PATH studies are two separate but related studies. You can take part in one study (study 1), or both.

Study 1 – PAIN PATH Survey

This involves people with inflammatory arthritis completing a short online questionnaire about their pain and the pain care they have received for their arthritis. It takes around 20 minutes to complete.

Study 2 – PAIN PATH Longitudinal Study

This involves people with inflammatory arthritis answering questions using an online Patient Portal(called the “PAIN PATH Portal”) every week for 3 months to understand how often and why they take pain medicines.

The Portal is a secure online NHS system. It has been developed by the study team and NHS staff to collect information for this study. Any information entered in the Portal is stored on a secure NHS server. Every week people are asked to answer questions about how bad their pain has been, which pain medicines they have used, and why they have used them. These take around 5 minutes to answer. Every two weeks people are also asked to answer questions about how active their arthritis has been, how they are functioning, how they are sleeping, and how they are feeling. These take around 10 to 15 minutes to answer.

People can also use the Portal to enter information more often if they would find it helpful (for example, to keep track of their pain over time). They can download an anonymised copy of their question answers and share them with their doctors and nurses.

After 3 months, people can continue to use the Portal until the study ends (expected to be in December 2024).

Who can take part?

You can take part in the Survey (study 1) if you:

  •  have been diagnosed with rheumatoid arthritis, psoriatic arthritis, or axial spondyloarthritis.
  • are at least 18 years old.
  • receive care in one of the UK National Health Services.
  • can complete an online questionnaire.

You can also take part in the Longitudinal Study (study 2) if you have:

  • completed the Survey and answer that you have used pain medicines in the last month.
  • have an email address (this is needed to register with the Portal).
  • can read and answer questions written in English (or have help from someone else to do this).

We are also asking people with inflammatory arthritis that are attending rheumatology clinics across the Midlands to take part in these studies. They are being told about these studies at their clinic appointments. If you are one of these people and have already taken part in the studies, please do not take part again. People can only take part in the PAIN PATH studies once.

How Can I Learn More?

To learn more about the PAIN PATH studies, you can read the Participant Information Sheet, which can be accessed by clicking here.

When Can I Take Part?

The PAIN PATH studies are now open to recruitment until the start of September 2024. You can consent to take part any time until then.