Background/Purpose: The diagnosis and treatment of inflammatory arthritis has been transformed largely by  the development of drugs that target specific molecules of the immune system. However, these changes have increased the complexity of the mechanisms of disease, its treatment and patients understanding. Patient education is needed in this area to facilitate decision making.

Methods: An online anonymous survey of 27 questions addressed patient understanding of their diagnosis, diagnostic tests performed at outpatient clinics, their treatments and how they worked. Questions also addressed adherence and disease flare, issues of heredity and pregnancy, and patient involvement in research.

Results: The survey was completed by 1,873 patients, 1607 had an inflammatory arthritis  RA (62.29%),  SpA (41.88%) and JIA (2.92%). Respondents were predominantly female (83.77%). Most patients understood the difference between inflammatory arthritis and osteoarthritis  (68.12% vs 31.88%), and 76.48% were concerned it was hereditary. Patients were asked to indicate their understanding of diagnostics tests performed at out-patient clinics (Scale 1-10; 1=don’t understand at all, 10=understand very clearly). For all diagnostic tests < 25% of patients had an understanding of what was measured and the implication for disease,  including ESR, CRP, RF, anti-CCP, VAS and Das28.    Significantly, 72% understood how specific medications treat inflammatory arthritis, while 27.97% had no understanding.  Adherence was strong with >87% vs 12% adhering to their medication.  Of those stopping medication, without the advice of their doctor, the main reasons were ‘feeling better’, ‘don’t think it works’ and ‘side effects’, however 68.43% of these patients also reported disease flare following cessation of medication. Patients of childbearing age (31%) worried that inflammatory arthritis reduced their chances of getting pregnant, and 79% believed arthritis medications are not safe to take during pregnancy. Finally,  only 9% of patients had ever been asked to participate in a research study by their doctor.

Conclusion: This patient awareness survey demonstrates that patients have an understanding of their diagnosis, but little understanding of the diagnostic tests performed, their implication for disease progression and response. Furthermore patients concerns regarding heredity and pregnancy need to be addressed more thoroughly. Patients reported significant medication adherence, with those non-adherent experiencing flares. Finally, very few patients had been asked to participate in a research study.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/patient-perceptions-of-diagnosis-tests-treatments-adherence-and-the-impact-on-their-disease-understanding-and-participation-in-research-studies/