Ranking the Importance of Their Own Diseases: A Positioning Analysis in Rheumatic Patients and Their Proxies.

Introduction/objective: To assess the positioning that patients with systemic lupus erythematosus (SLE), rheumatoid arthritis (RA), ankylosing spondylitis (AS) and their proxies give to their diseases.

Methods: Subjects completed a self-administered questionnaire to rank 11 diseases from "worst" to "least bad". Then they defined the "worst" disease and ranked 10 diseases from highest to lowest importance from a list including "my rheumatic disease/my relative's disease". The lists of the included diseases represented the mindshare from a sample of healthy adults.

Results: There were 570 respondents (104 SLE, 99 RA, 82 AS, and 285 proxies). Rheumatoid arthritis was considered the third-worst disease (recoded ranking first by 41% of patients and 43% proxies, second by 49% and 44%, and third by 10% and 13%). A disease that kills was the preferred definition for the worst disease. "My disease/my relative's disease" was ranked fourth in importance (first by 41% of patients, second by 38%, and third by 21%). Rankings were not associated with age, schooling, disease duration, or setting.

Discussion And Conclusions: Most respondents ranked their own disease considerably lower than other non-rheumatic conditions.