“Supporting Fatigue” at the 2016 American College of Rheumatology Annual Meeting
The American College of Rheumatology (ACR) is a professional organization committed to improving the care of patients living with rheumatic diseases. Each year, ACR hosts a meeting attended by rheumatologists, researchers, and other rheumatology healthcare professionals – the 2016 meeting in Washington D.C. had over 16,700 attendees! This year I was pleased to see a session focusing specifically on the issue of fatigue and how doctors can help their patients better manage it.
Fatigue is very different than normal tiredness.
The speaker was Dr. Sarah Hewlett, the Arthritis Research UK Professor of Rheumatology at the University of the West of England in Bristol UK. Dr. Hewlett began her session by emphasizing the enormous impact that fatigue can have on patients living with rheumatoid arthritis. She explained that fatigue is very different than normal tiredness. Instead, it is overwhelmingly physical (weary, exhausted, drained, heavy, struggle) and overwhelmingly cognitive (can’t think or follow what’s going on, brain fog, absent presence). Fatigue also creates major consequences in patients’ lives – patients tend to withdraw, become unpredictable, refuse to plan anything in advance or commit, roles are altered, relationships may suffer, and there is an emotional toll when it feels like no one understands and professionals aren’t helping. While a 2004 study showed that 65% of patients prioritized fatigue, Dr. Hewlett pointed out that doctors too often focus on pain and ignore fatigue.
Dr. Hewlett and her research team have been working to raise the profile of fatigue in RA treatment, resulting in international agreement that fatigue must be measured in all clinical trials. There are many related factors – such as mood, pain, disease activity, depressive symptoms, sleep quality, and physical inactivity – that make it difficult to develop an accurate model of fatigue. But through qualitative interviews, focus groups, cognitive interviewing, and testing, her research team has developed the Bristol RA Fatigue scales (BRAFs).
The BRAFs are the first measure of fatigue that provides not only a global score but also a score for four different dimensions of fatigue: (1) living with fatigue, (2) physical fatigue, (3) emotional fatigue, and (4) cognitive fatigue. In addition, the team has developed numerical scales that measure fatigue coping, severity, and effect. The BRAFs have been translated into 36 languages and are freely available for academic and clinical use.
Dr. Hewlett encouraged the doctors in the audience to validate their patients’ experiences of fatigue by asking what fatigue is like for each individual and listening attentively. She also provided daily activity charts that can help patients identify trends, address boom and bust behaviors, and find a balance between activities that use too much energy and activities that refresh. Discussing fatigue in more detail may allow doctors to help their patients identify priorities and set measurable, achievable, and realistic goals. She also encouraged doctors to provide resources for managing stress, improving poor sleep, and incorporating regular exercise.
Fatigue is a complicated experience...
Overall, Dr. Hewlett’s presentation and published research has shown that fatigue is a complicated experience for patients and that many patients are struggling to manage fatigue at both a physical and cognitive level. Unfortunately, her research also shows that patients feel healthcare professionals are ignoring the impact of fatigue. Hopefully, with more data on the various dimensions of fatigue, doctors will be better able to support their patients in the future.
What has been your experience with fatigue? What has your doctor done to help? What do you think your doctor could do better?
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?