Background Part of the rheumatoid arthritis patients experience high levels of pain and fatigue despite of the low level of observed disease activity by the rheumatologist.1,2
Objectives The aim of this study was to explore the patients perspective on the discrepancy between disease activity and disease burden and what patients expected to need reducing their disease burden.
Methods An exploratory qualitative methodology using focus groups was applied using a semi-structured interview scheme. Patients were recruited from the RAPPORT study (RA patients from one outpatient clinic in Rotterdam). Five focus groups were convened with 36 participants. Transcripts were systematically analyzed and reviewed to identify codes and themes by two researchers independently. Analyses were completed using software programme ATLAS.TI.
Results In the transcripts a total of 19 codes were identified and grouped into five themes. The first major theme was mental stress; it describes the influence of stressful situations on disease burden, especially fatigue. The second major theme is balance, this includes seeking balance between activity and resting. Patients talked about being able to do daily activities and special activities. To deal with the burden of these activities they used planning, adapting and avoiding of tasks, while in some cases they ignored their disease and just carried on doing what they really wanted to do. They accepted that ignoring could results in “off days”. Medication intake was the 3rd theme. Discussion was raised on the negative influence of medication on general well being, although some patients mentioned that the relationship between disease and use of medication was difficult to disentangle. Feeling misunderstood (theme 4) by others impacted on well being. Chronicity of the disease (are you still suffering from RA?), appearing not being ill and pain and fatigue ignored by doctors were discussed.The last theme identified was physical activity. More pain and fatigue after exercise or other intense physical activities were mentioned to stay away from exercise. Although patients were well aware of the impact of physical exercise, stress and finding balance, for many it was also hard to implement these strategies effectively into daily life.
Conclusions Our results identify issues that are meaningful to patients and can improve our understanding of discrepancy between disease activity and disease burden. Patients highlighted that the reasons of the high disease burden are difficult to explain, but stress, balance, physical activity, the use of medication and lack of understanding by others were the main themes in the focus groups. Stress management, finding the right balance and tailored physical exercisemay help to improve general well being in these patients enabling them to cope better with their rheumatoid arthritis.
Taylor P, J Int Med Res 2010
Lee YC, Arthritis Res Ther 2011
Disclosure of Interest None Declared
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