Background Patients with psoriasis (PSO) and inflammatory bowel disease (IBD) are at risk for developing spondyloarthritis (SpA). To overcome diagnostic delay, physicians treating patients with these conditions should be aware of this increased risk to minimize doctors' delay in referring patients to specialized care. However, as patients' delay could also be an issue, patients themselves should also be aware of their risk to develop SpA. Since the need to empower patients in order to effectively manage their disease has recently been included in several guidelines for rheumatic diseases, involving patients in their disease becomes more and more important.
Objectives To assess whether patients with PSO or IBD are aware of the risk of developing SpA and if so how they became aware.
Methods A cross-sectional study was set up including PSO and IBD patients between 18 and 55 years of age. Patients were invited to participate either by their GP or by the patient organizations for PSO and IBD. Patients willing to participate completed a set of questionnaires regarding their disease, level of awareness and presence of musculoskeletal complaints.
Results 552 PSO patients completed the questionnaires, of which 43.1% indicated to be aware of the possibility of developing a rheumatic condition already before the study-invitation. Of these 238 patients, 34% indicated to have gained this knowledge by themselves. Another 13.5% was informed by their GP and 24.4% by their medical specialist, while 18.5% learned from family or neighbors. Of the IBD patients, 344 completed the questionnaires, of which 41.9% was aware of the possibility of developing a rheumatic condition before the invitation for the study. The majority of patients was informed by their medical specialist (40.3%) or gained this knowledge by themselves (39.6%). Only 1.4% was informed by their GP and 9.7% learned from family or neighbors. For both PSO and IBD, patients who were recruited via the patient organizations were significantly more aware than patients recruited via the GPs.
Conclusions Less than half of the patients with psoriasis or IBD are aware of the possibility of developing a rheumatic condition. If patients are aware, the majority gained this knowledge by themselves and 60% were not informed by a medical professional. More awareness could be achieved if medical professionals like the GP or the medical specialist would have more knowledge about symptoms of SpA and are trained in informing their patients about the increased risk of developing SpA. Public awareness campaigns to inform patients at risk could also be beneficial in minimizing patients' delay. Patient organizations could play a role in this awareness campaigns, since they already seem to inform their patients well.
Acknowledgement This survey is part of initiative to develop a communication platform which was financially supported by AbbVie.
Disclosure of Interest None declared
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