Background/Purpose: In a longitudinal study aiming to use patient self-reported disease activity measured by three domains: functional ability (HAQ), disease activity (RADAI) and fatigue (VAS) to predict change in the subsequent physician assessed DAS28 we failed to demonstrate a sufficient association between both measures. This led to the question to why there is a difference between the self-reported measures and the DAS 28.

Objectives: The aim of this study was to explore the patient’s perspective on the discrepancy between patient self-reported disease activity and physician assessed disease activity.

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). Four focus groups were convened with 29 participants.

Results: Five themes were identified: balance, mental stress, medication use, feeling of being misunderstood and lack of physical fitness. Balance (1) between activity and rest was reported to easily affect the observed discrepancy. To manage activities patients used planning, adapting, avoiding, but also ignoring of symptoms. Ignoring could results in “off days”, and a number of patients accepted high levels of self-reported disease activity as they did not wish to reduce their level of activities. Mental stress (2) was regarded especially affecting levels of fatigue. Medication intake (3) was felt to have a negative influence on the self-reported measures that was not picked up by the physician measure of disease activity, although some patients mentioned that the relationship between disease and use of medication was difficult to disentangle. Feeling misunderstood (4) by others impacted on well being, maybe not directly affecting levels of self-reported disease activity, but via emotional and cognitive appreciation of the already existing symptoms. Chronicity of the disease (e.g. remarks by family and friends such as “are you still suffering from RA?”), appearing not being ill and pain and fatigue ignored by doctors were discussed. Lack of physical fitness (5) was perceived as having a negative impact on pain and fatigue both in mental and a physical way. Although patients were well aware of the potential positive impact of physical exercise, stress reducing techniques and finding the right balance in activities and rest, for many it was also hard to implement these strategies effectively into daily life.

Conclusion:

Discrepancies between self-reported disease activity and physician reported disease activity in patients with low levels of DAS28 could be themed in mental stress, lack of physical fitness, difficulty in finding balance between rest and activity, feeling misunderstood by others and medication use. Patients highlighted that the reasons of the high disease burden are difficult to explain, and different combination of factors affecting self-reported disease activity hold for individual patients.

Stress management, finding the right balance and tailored physical exercise may help to improve general well being in these patients enabling them to cope better with their rheumatoid arthritis.

---

« Back to 2012 ACR/ARHP Annual Meeting

ACR Meeting Abstracts - https://acrabstracts.org/abstract/discrepancies-between-disease-activity-and-disease-burden/