Background and aims To investigate and compare the health status concerns of physicians and patients with systemic lupus erythematosus (SLE).
Methods Patients and their treating physicians completed a questionnaire asking their concern for specific disease manifestations and disease impact on quality of life. For each item, degree of concern was measured on a 5-point Likert scale. Sub-groups were compared by Kruskal-Wallis test for significance.
Results A total of 84 patients and 21 physicians participated. Patients were predominantly concerned with function and fatigue, whereas physicians focussed on organ complications of SLE. Seven out of the top 10 patient concerns showed statistically significant differences to physician ratings, including “reduced ability to perform activities of daily living (ADLs)” (p=0.02) and “reduced ability to perform physical activities” (p=0.04). All the top 10 physician concerns showed statistically significant differences to patient ratings, including “seizures” (p=0.003) and “stroke” (p=0.002). The top 3 patient concerns were routinely assessed by 47.6%, 42.9% and 9.5% of physicians, respectively.
Top 10 patient concerns:
Top 10 physician concerns:
Conclusions There was significant discordance between patient and physician health status concerns. Items which were ranked highly by patients were systematically underestimated by physicians, highlighting an urgent need to improve communication. Further studies could explore ways within the healthcare interaction that could improve patient satisfaction and disease control.
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