Ranking the importance of their own diseases: A positioning analysis in rheumatic patients and their proxies

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

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.

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.

Most respondents ranked their own disease considerably lower than other non-rheumatic conditions.