Half a million people in the UK live with rheumatoid arthritis, a condition that causes joint inflammation, pain, stiffness and fatigue. Around a third of these people also experience mental illness, but currently there’s little support available to them.
Our Fellow Dr Sam Norton is determined to incorporate mental healthcare into arthritis treatment. We spoke to him to find out how he’s getting on...
What is life like for someone with rheumatoid arthritis? What are some of the challenges they face?
People can develop rheumatoid arthritis at any age, but onset peaks in the early 50s, when most people are still in work with around 10 - 15 years of their professional life left. Pain and fatigue are often discussed in clinic appointments, but what’s rarely talked about is the distress people experience due to the impact of the condition on their day to day lives.
It can be simple things like getting dressed or cooking, as arthritis mainly affects your hands and wrists. One of the things I hadn’t realised before I started this research were the different challenges facing men and women with arthritis. For men, buttoning up a shirt and putting on a tie for work are daily struggles, whereas for women there’s a lot more choice in clothes, so you can adapt what you’re wearing.
How does all of this impact their mental health?
You can look at someone with arthritis and not know they have the condition. This means they often have to speak up and admit there are certain things they can’t do – for example, using a keyboard or writing with a pen. People don’t realise the effect this has on a person.
Nearly 1 in 4 people with a musculoskeletal condition have symptoms indicative of a mental illness. So it’s a huge proportion of people and obviously a widespread problem. Despite this, there’s very little focus on mental health, particularly early on in the treatment process.
A lot of my research is looking at how we can identify people who may struggle with mental health issues as soon as possible. With this information, we can offer them treatments to not only reduce the impact of the condition on their physical health, but also the impact rheumatoid arthritis is having on their mental health. These treatments might be antidepressants or psychological interventions, such as cognitive behavioural therapy, but could also be things like physiotherapy and more general lifestyle advice to help people adapt to life with rheumatoid arthritis.
What has your research revealed so far?
For a long time, distress has been seen almost as an inevitable part of living with the inflammation and pain caused by arthritis. The belief has been that if treatments can reduce this inflammation, that will reduce other physical symptoms, as well as the mental distress.
However my research shows that, over the last 25 years, although treatments have dramatically improved levels of inflammation, the mental health issues of those with arthritis have remained largely unchanged. This data shows a clear and increasing disconnect between the help people are currently receiving and the help they actually need.
Patients often don’t realise that even if they go into remission, they won’t necessarily be living without symptoms like pain and fatigue, which can have a huge impact on their mental wellbeing. People are falling through the cracks because it hasn’t been recognised that there are extra things that could be done to have a positive impact on their psychological wellbeing.
How will your MQ project help?
My team and I are finding ways to support people earlier on in their treatment. This early intervention should look not only at reducing inflammation and relieving physical symptoms, but also explore ways to have a positive impact on a person’s mental health.
For example, connecting different services could help them work together more effectively, and give rheumatologists a better understanding of the mental health services they could refer a patient to. We’re also looking at how clinicians talk about treatment, to make sure they’re managing people’s expecations of what life after treatment will be like. Rheumatoid arthritis is a chronic condition and it’s likely people will experience persistent physical symptoms even if inflammation treatments have worked. At the moment people feel like failures or a burden on the NHS if they need continued support.
It’s important that they understand the reality of the condition and are given support to adapt their lifestyle to manage it.
You’re intending to use your findings to develop an app to help people with the condition. How will this work?
There are already a lot of technical advances in the way clinical care is being delivered, and these are likely to increase in the next 20 years. Some of my research will hopefully feed into an app, where people will be asked to answer short questionnaires about their mental health – for example, how they’re coping with the symptoms and daily life - every few weeks. This will help rheumatologists to build a more accurate picture of how the patient is coping over time, to understand what treatment and support they may need.
What are the next steps?
We’re now in the process of looking at trends in symptoms of mental health among people with rheumatoid arthritis, and how many people are achieving remission.
After that, we’ll work on developing models to predict how different people might respond to treatment, focussing on identifying those who are most likely to experience mental health issues (even if they have a good response to medication). If, at the end of this, it looks like this model can accurately predict the people who require more support, we can begin testing the model and putting it into clinical practice through out newly developed smart phone app. That will hopefully be in about two years’ time.
Find out more about Sam's app in this video.
Last updated: 24 September 2018