Background and aims Patients with systemic lupus erythematosus (SLE) assess their disease activity differently to physicians. Prominent physician indices used to assess SLE disease activity include Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) and British Isles Lupus Assessment Group (BILAG) index. We evaluated whether multidimensional health assessment questionnaire (MDHAQ), an extensively used patient reported measure, may be useful in assessing disease activity in SLE.

Methods Seventy-two consecutive patients with SLE were studied in the usual care of three rheumatologists. All patients completed an MDHAQ and the rheumatologist completed a physician global, SLEDAI and BILAG for each outpatient visit. Patients were classified as likely fibromyalgia if they scored pain ≥6/10 and range of symptoms≥16/60. Scores and indices were compared using correlation and t-test.

Results Patients included 65 women and 7 men, with a total of 203 outpatient visits. In all patients, there were no correlations between patient reported outcomes and SLEDAI or BILAG. In patients without fibromyalgia, mean RAPID3, pain and patient global (PATGL) scores were significantly higher in patients with a severe BILAG class. However, none of these scores were significantly different between mild and moderate BILAG class. PATGL modestly correlated with physician global, and was usually higher than physician global.

Conclusions MDHAQ can alert the physician about the patient perception of disease activity, which is different to the physician’s perspective, and is not part of the accepted SLEDAI/BILAG assessment. These preliminary results support further study to evaluate the clinical utility of MDHAQ as a measure of SLE disease activity.