Identifying Gaps in axSpA: Lessons from European Map of Axial Spondyloarthritis (EMAS) Save

As patients with rheumatic disease become important partners in raising awareness and management of their conditions, their valuable contributions in research are reflected in the poster sessions on patient perspectives and outcomes.

Three interesting abstracts were presented by the group of Prof. Marco Garrido-Cumbrera on the European Map of Axial Spondyloarthritis (EMAS). Abstract #0359 analyzed the journey of axSpA patients from diagnosis to management using an online survey from 2017-2018 across 13 European countries. Results of the survey show that the mean diagnostic delay was 7.4 years. More than half of the patients had a diagnostic delay of >4 years and patients on average visited 2.6 specialists before a diagnosis was made. X-rays, followed by HLA-B27 and MRI were the most common diagnostic tests requested. Majority of the diagnosis was made by a rheumatologist (78.4%) while some (14.9%) by a general practitioner. Patients with active disease (BASDAI>4) also reported more frequent visits to rheumatologists, general practitioners, physiotherapists, and psychologists/psychiatrists. 

In another study, abstract #0360, patients who reported pain were analyzed. Pain (from a scale of 0=no pain to 10=most severe pain) was measured by the mean of two BASDAI questions: “How would you describe the overall level of AS neck, back or hip pain you have had?” and “How would you describe the overall level of pain/swelling in joints other than the neck, back, hips you have had?”. More than half of patients (76.2%) had a pain score >4. Multiple linear regression analysis to identify the association between pain and several factors like demographics, PROs and physical activity showed that patients with higher pain intensity were females (B=0.26), had at least one work-related issue (B=0.65), difficulty finding work due to axSpA (B=0.48), not having attended university (B=0.38), greater spinal stiffness (B=0.29) and poorer mental health (GHQ-12;B=0). In addition, pain was also associated with anxiety, depression and sleep disorders. 

Lastly, abstract #0361 identified factors that were associated with engaging in physical activity among axSpA patients using the same online survey. Results show that belonging to a patient organization (OR 1.91), not being obese (OR 1.58), having a university education (OR 1.54) being male (OR 1.3), lower spinal stiffness (B-0.11), better mental health (B-0.04) and increasing age were factors that increased the probability of engaging in physical activity. 

Despite the increasing scientific knowledge on axSpAs, a substantial gap still remains. Delay in diagnosis continues to pose a threat in the early identification of patients and those already on treatment may deal with additional issues such as work productivity or quality of life.

Axial spondyloarthritis is a multifaceted disease and the abstracts described above represent just a few aspects of it, pain among one of these. It is a central symptom in axSpA and the severity of pain not only affects physiological but psychosocial functioning as well. Therefore, apart from monitoring disease activity and treatment response, mental health should also be considered. As shown in the results of abstract #0361, when patients feel good about themselves, have a strong support system and experience less stiffness, they are motivated to move and engage in physical activities. As exercise is an important non-pharmacological approach in axSpA, encouraging patients to lead active lifestyles reinforces their involvement in the management of their disease.

Managing expectations and shared-decision making becomes important foundations in the physician-patient relationship. The EMAS provided critical information from a patient’s perspective. As rheumatologists, understanding our axSpA patients better, assessing areas for improvement and taking a multidisciplinary approach may help narrow the gap.