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Title

GATHERING PATIENTS’ AND PHYSICIANS’ PERCEPTIONS TO IMPROVE OUTCOMES IN SYSTEMIC AUTOIMMUNE MYOPATHIES

Background

Treat-to-target (T2T) strategy has become the best approach to treat rheumatic disorders. However, most targets are only based on specialists’ opinions. There is evidence that switching to a more patient-centered healthcare system enhance treatment adherence and improve outcomes. This research purposes were to assess the concerns of patients with systemic autoimmune myopathies (SAMs) and compare to the rheumatologists’ concerns; and to gather patients’ and physicians’ concerns to develop a SAMs outcome standard set.

Materials and methods

From 2018 to 2019, 93 adult patients with SAMs (49 dermatomyositis and 11 polymyositis - EULAR/ACR 2017, and 33 anti-synthetase syndrome - Connors et al., 2010) and 51 rheumatologists from a tertiary center were invited to answer an open questionnaire. Thereby, the top 10 answers were selected and applied a multiple-choice questionnaire, inquiring the top 3 major concerns. Answers of each group were plotted into charts and frequencies were compared. The agreement rate was calculated by the sum of lowest frequency of each concern. Concerns were gathered in a SAMs outcome standard set, following the methodology proposed by the International Consortium for Health Outcomes Measurement. We also evaluated if the patients’ concerns were associated with any current clinical features or comorbidities.

Results

The top three concerns raised among the patients were: to avoid side effect of medication (51%), to improve muscle weakness (49%) and to prevent loss of functionality (35%). The top three concerns among rheumatologists were: prevent loss of functionality (71%), ensure quality of life (63%) and achieve disease remission (63%). The agreement rate between both groups was 41%.
The patients’ concerns that rheumatologists did not mention were respectively the improvement of: muscle pain (33% vs. 0%, P=0.001), diffuse pain (25% vs. 0%, P=0.001), skin lesions (23% vs. 0%, P=0.001) and fatigue (18% vs. 0%, P=0.001). The rheumatologists’ concerns that patients did not mention were respectively the: achievement of disease remission (63% vs. 0%, P=0.001) and prednisone dose (0% vs. 22%, P=0.001). The concerns of pain and fatigue were not associated with other diagnosis such as fibromyalgia or depression/anxiety. Gathering both point of view, we developed a SAMs outcome standard set (Figure 1).

Conclusions

Even though functionality and muscle weakness are still major concerns for physicians and patients, there are additional patients’ concerns that should be assessed routinely during SAMs treatment and follow-up: controlling pain and fatigue Rheumatologists should be aware of these to provide a better assistance and ensure treatment adherence.

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