Discordance of patient and physician health status concerns in systemic lupus erythematosus

Abstract

Objectives To compare the health status concerns of patients with systemic lupus erythematosus (SLE) and of their physicians. Methods Cross-sectional questionnaire study of SLE patients and their treating physicians at a tertiary disease-specific outpatient clinic. Patients and physicians completed a questionnaire regarding their concern about specific disease manifestations and impact on quality of life. For each item, degree of concern was rated on a five-point Likert scale and summarized as median (interquartile range). Ratings between patients and physicians were compared using Mann-Whitney U tests. Results A total of 84 patients and 21 physicians participated. Patients' predominant concerns centred on function and fatigue, whereas physicians' concerns focused on SLE-related organ complications. Of the 10 highest ranked patient concerns, only two were common to the 10 highest ranked physician concerns, while physicians rated seven significantly differently; all 10 highest ranked physician concerns were rated significantly lower by patients. The three highest ranked patient concerns (fatigue, pain and feeling worn out) were routinely assessed by 47.6%, 42.9% and 9.5% of physicians, respectively. Conclusion There was significant discordance between SLE patient and physician health status concerns. Items which were ranked highly by patients were not assessed consistently by physicians, highlighting a significant gap in healthcare communication.

Peripheral Nervous System Disease in Systemic Lupus Erythematosus: Results From an International Inception Cohort Study

“…Due to the rapid improvement in cranial neuropathies (Figure ), the first SF‐36 summary scores following their onset were not adversely affected as occurred in patients with peripheral neuropathy and mononeuropathy, both of which had a slower recovery (Figure ). Discrepancy between physician‐reported and patient‐reported outcomes has been seen in other SLE manifestations . This finding emphasizes the importance of capturing both physician and patient perspectives on the potential benefit of an intervention, be it in the treatment of individual patients or in the context of clinical trials.…”

Comparison of performance of specific (SLEQOL) and generic (SF36) health-related quality of life questionnaires and their associations with disease status of systemic lupus erythematosus: a longitudinal study

“…The assessment of HRQoL in SLE continues to attract attention, based on the emerging understanding that physician and laboratory measures do not capture all information important to patients [40]. Multiple instruments have been developed for SLE alongside well-validated generic HRQoL instruments, but the comparative utility of generic and SLE-specific instruments remains unclear.…”

Systemic Lupus Erythematosus in Primary Care: An Update and Practical Messages for the General Practitioner

“…Non-adherence to recommended therapy is more common at the first stages because of the difficulty patients face in accepting a chronic disease that requires lifelong treatment ( 100 ). Interestingly, of the 10 top patient concerns, only two were common to the top 10 physician concerns and vice versa: most of what physicians rated higher, were rated lower by patients, suggesting the existence of communication gap ( 101 ). Another explanation could be the different perspectives and priorities of patients with SLE, especially the younger ones ( 102 ), such as the limitation of their capacities at physical and social level or achieving their personal goals.…”