Helping people with rheumatoid arthritis manage their fatigue
Research at UWE Bristol has led to a process of measuring fatigue in people with rheumatoid arthritis which has been adopted internationally in clinical trials and informed interventions that have improved the quality of life for the many people who experience impacts from their rheumatoid arthritis.
Improving the quality of life for those with rheumatoid arthritis
Research at the University of the West of England, Bristol, has identified that fatigue is a major problem for people living with rheumatoid arthritis (RA).
The UWE Bristol team of researchers developed a questionnaire to measure fatigue, and ensured that fatigue is now measured in every international clinical RA trial. They then developed and tested a successful self-management intervention that has significantly reduced fatigue and improved quality of life in people with RA, and which many clinical teams are utilising in the UK and internationally.
How important is fatigue in rheumatoid arthritis?
Professor Sarah Hewlett, Arthritis Research UK Professor of Rheumatology Nursing at UWE Bristol, conducted research that found that patients consider fatigue to be a significant and unmanageable problem, often ignored by health professionals. Professor Hewlett and her team showed for the first time that patients consider fatigue to be a crucial factor impacting on their quality of life, and rate fatigue as more severe and more important than the pain of RA.
This resulted in international agreement by patients and health professionals that fatigue must be measured as a core outcome in all RA clinical studies. The team then developed and validated the Bristol RA Fatigue Scales (BRAFs) to measure fatigue severity, coping and impact. These scales are free for use and have been translated into almost 40 languages for use world-wide.
How we have helped patients
Professor Hewlett’s team tested the use of group cognitive behavioural therapy (CBT) for RA fatigue. CBT works by helping people understand the links between the thoughts and feelings that drive their behaviours, which might be making fatigue worse. For example, why do they keep going when they know they should rest?
Patients that took part in group CBT reduced the impact and severity of their fatigue. They also improved their coping skills and their physical and psychological wellbeing. As a consequence, people recommenced their valued leisure activities.
As few rheumatology teams have a clinical psychologist to deliver group CBT, Professor Hewlett’s team has now trained nurses and occupational therapists to deliver the CBT approach to patient groups, and is testing this in seven hospitals.
Making a difference locally, nationally and worldwide
Patients have described the improvement in their quality of life since receiving CBT as "long-lasting" and "life-changing". In Scotland, Occupational Therapists are utilising the programme with "improvements in outcomes and patient experience". An international RA patient panel has testified to improvements in clinical practice internationally, describing these as "groundbreaking… fatigue is no longer denied, dismissed or neglected."
Professor Hewlett’s team also wrote an Arthritis Research UK booklet on fatigue self-management, which is now stocked in all rheumatology clinics across the UK. Over 82% of UK rheumatology nurse specialists are now using the booklet to support patients, 98% find it helpful for patients, and 83% do not require further fatigue information (compared to 35% six years earlier).
UWE Bristol’s research into fatigue is cited in the standards for UK service provision - British Society of Rheumatology and British Health Professional in Rheumatology Guidelines for managing RA - which states that fatigue must be addressed.
In 2012, Hewlett’s presentation of the CBT research, transmitted to 15 hospitals across British Columbia in Canada, led to a change in clinical practice. The programme leader reported clinical staff were "using the work of Professor Hewlett’s team to better assist clients" helped by the provision of "tangible resources."
The Arthritis Society of Canada has used the fatigue self-management materials to develop an online fatigue module for Canadians living with arthritis, and the international pharmaceutical industry has highlighted how the work has helped place fatigue at the centre of drug development, being referred by one world-wide company (UCB) as a "breakthrough… critical in the drug development process."