Fatigue is experienced by lots of people living with types of inflammatory arthritis, such as rheumatoid arthritis. For UWE Bristol’s rheumatology research team, based at the Bristol Royal Infirmary, understanding how best to manage fatigue has been a priority for over ten years. The team is led by Emma Dures, Professor in Rheumatology and Psychology, and here she describes the research journey so far:
We started with qualitative research to gain insights into how people with inflammatory arthritis experience fatigue and the impact that it can have on their lives. We heard that fatigue can be intrusive, overwhelming and that for some people, it is the most difficult symptom that they’re dealing with. It can affect work and leisure and it can stop people from doing the things that are important and that matter to them. It can also affect people’s relationships and their sense of who they are. This underpinning qualitative research has led to studies on fatigue assessment, fatigue interventions and clinical recommendations.
In 2014, we developed the BRAFs (Bristol Rheumatoid Arthritis Fatigue scales). The BRAFs are a set of measures that capture the nature and severity of people’s fatigue as well as the impact and how well they are coping. The BRAFs are free to use and have been translated into more than 36 languages.
Bristol rheumatoid arthritis fatigue scales
We still don’t know what causes fatigue in inflammatory arthritis and currently there is no cure or medicines that can be prescribed to treat fatigue. However, we have developed an understanding of the interacting biological, psychological and social factors that can contribute to the symptom. They include the inflammation from the arthritis itself, the pain and poor sleep associated with arthritis, the things people do, including how much and how often, and the things that people have going on in their lives. Appreciating the complexity and range of factors that can affect individuals’ fatigue has helped us to develop and test self-management interventions, including training and resources for rheumatology health professionals.
One of our interventions involved people with inflammatory arthritis and fatigue having between two and four one-to-one sessions with a rheumatology health professional. The sessions incorporated cognitive-behavioural techniques and explored adaptive behaviour changes and ways to enhance coping skills. The study, called FREE-IA (Fatigue – Reducing its Effects through individualised support Episodes in Inflammatory Arthritis), was funded by the NIHR (National Institute for Health Research). The FREE-IA results suggested that the intervention was promising and could help people to self-manage the impact of their fatigue. This was the catalyst for our fatigue animation project.
When it came to dissemination, we felt that there was a bigger story behind the FREE-IA research. We agreed that those who needed to hear about the research were those who are dealing with how to manage the symptom, namely people with inflammatory arthritis and rheumatology health professionals.
In the FREE-IA study, we had interviewed people with inflammatory arthritis who took part in the intervention. We had heard them describe their fatigue and how it affected their health and wellbeing, as well as hearing about things that could help. We wanted to keep these narratives central to our dissemination and the overall story of fatigue, so we recruited three patient partners with personal experience to collaborate on an animation.
Together with the researchers, they wrote a script for an animation. The narrative is that fatigue in inflammatory arthritis is a real symptom and that it is one that health professionals and researchers take seriously.
“Animation is one of the most powerful storytelling tools. It can be beautiful, accessible, and is one of the best ways to make your story and message cut through and reach the people who need to hear it.” Lauren Orme at Picl Animation in Cardiff and her team brought the script to life visually and enabled the patient partners to record the script as the voiceover.
“Bringing the script to life felt exciting and rewarding. My challenge was self-consciousness over my voice and expressions: it took a while for me to relax into it. The recording of our three voices was a good combination which brought patients experiences and expressions to life and produced something which I believe those dealing with fatigue can connect with” – Marie Urban
“Helping to create a script by means of an online team call was certainly a new but rewarding experience for me…What was hardest for me was finding the recording studio. What I gained was the importance of attention to detail of the entire recording process such as working in harmony with the editor and sound engineer” – Terence Brady
The patient partners involved reflected on the collaboration and the value of their involvement.
“By having patient and public being actively involved in research, will help to guide the research outcomes to a more patient orientated findings and hopefully will have more impact on the ‘good health’ of the general public”
“Patients and the public can often reach out to each other and communicate in additional ways. It can help ensure research is going in the right direction and not missing anything which people with a condition experience, need and find important.”
Now, our priority is putting research evidence into practice, making it easier for people to talk about their fatigue and making fatigue support easily and widely available to people with inflammatory arthritis. We have just published recommendations for fatigue management in inflammatory arthritis and we hope that this will help. The recommendations are based on systematic reviews of both pharmacological (drug) and non-pharmacological interventions and are endorsed by EULAR (European Alliance of Associations for Rheumatology).
We hope the animation will raise awareness with the public, people who have inflammatory arthritis and healthcare teams, including those working in rheumatology.
The FREE-IA Study
- Brief intervention to reduce fatigue impact in patients with inflammatory arthritis: design and outcomes of a single-arm feasibility study
- Rheumatoid arthritis fatigue research
- View the animation
- Download the qualitative paper below:
Credits
FREE-IA study team
Emma Dures, Susan Bridgewater, Bryan Abbott, Jo Adams, Alice Berry, Lance M McCracken, Siobhan Creanor, Sarah Hewlett, Joe Lomax, Mwidimi Ndosi, Joanna Thorn, Marie Urban and Paul Ewings
Production Team
- Lauren Orme and the team at Picl Animation
- Oli Clarke – Sound engineer
- Terence Brady – Patient partner and voiceover
- Caroline Swales – Patient partner and voiceover
- Marie Urban – Patient partner and voiceover n
- Jen Orme – Project coordinator
This research was funded by the National Insitute for Health Research (NIHR) and sponsored by University Hospitals Bristol and Weston (UHBW) NHS Trust.