Background/Purpose: Shared decision making remains central to the effective treatment of many rheumatologic conditions and is most appropriate when the patient and physician agree on which disease is being treated. Several studies in the oncology literature have shown that patients frequently do not understand their cancer diagnosis, including what stage of cancer or whether their cancer is in remission. Few studies to date have investigated whether patients with rheumatic disease have an accurate understanding of the diagnoses for which they are receiving treatment. In this study, we sought to assess the concordance between physician and patient reported diagnoses and factors associated with this concordance.

Methods: Over a four-week period in 2019, established patients presenting for a follow up visit in the University of Virginia Rheumatology Clinic were asked to complete a brief questionnaire. This questionnaire included self-reported diagnoses, an assessment of current disease activity, and demographic information. Patient reported diagnoses were compared with the diagnoses recorded by their rheumatologist in the electronic medical record. Allowing for misspellings and multiple answers, patients were considered concordant as long as one diagnosis was correctly identified. Eight patient characteristics including demographic and disease-specific variables were then compared between the concordant and discordant groups using chi-squared testing or Fisher’s exact test as appropriate.

Results: A total of 170 patients completed the questionnaire. Forty-two of 170 patients wrote responses that did not match their rheumatologist’s documented diagnosis (75.3% concordant, 24.7% discordant). Statistically significant predictors of discordance were non-white race (p = 0.02), non-English first language (p = 0.008), an annual household income below $50,000 (p = 0.007), and fewer years of completed education (p < 0.001). Predictors that did not associate with concordance were age, sex, disease length, and the type of disease (e.g. connective tissue disease, arthritis, vasculitis, etc.). Binary logistic regression modeling indicated that postgraduate education was the best predictor of concordance with an adjusted odds ratio of 3.4 (p = 0.002). Interestingly, patients who incorrectly named their diagnosis had a significantly higher score on a self-reported 100mm visual analog scale of global disease activity with an average of 34mm in the concordant group vs. 56mm in the discordant group (p < 0.001).

Conclusion: One quarter of surveyed patients inaccurately named their documented rheumatologic diagnosis. Poor agreement between patient and physician reported diagnoses spanned all types of rheumatic disease and was best predicted by lower levels of education. Poor agreement on diagnoses was also associated with higher patient reported global disease activity. This study reinforces the importance of addressing poor disease understanding in order to improve shared decision making between patients and their rheumatologists.

ACR Meeting Abstracts - https://acrabstracts.org/abstract/what-disease-do-you-have-assessment-and-predictors-of-accurate-illness-naming-in-rheumatology/