These results are consistent with the principles upon which the BILAG index was devised and suggest that a moderate disease flare can be defined as a new B score following a C, D or E score according to the BILAG index.

Objective: To establish the prevalence of reduced bone mineral density (BMD) and fractures, and risk factors for fractures, in a cross sectional study of a large cohort of patients with systemic lupus erythematosus (SLE). Methods: All SLE patients willing to take part in the study had bone densitometry in 1999/2000 and completed a questionnaire on risk factors for osteoporosis and on drugs used. Accumulated damage was scored using the SLICC/ACR damage index (SDI). Only fractures occurring since the onset of SLE and unrelated to trauma were included, and the SDI score was modified to exclude osteoporotic fractures. Statistical analysis was by x 2 test, Fisher's exact test, and binary logistic regression. Results: 242 patients were studied, median age 39.9 years (range 18 to 80), median disease duration 7.0 years (range 0 to 42). Of these, 123 (50.8%) had reduced BMD (T score ,21.0) and 25 (10.3%) were in the osteoporotic range (T score ,-2.5). Fragility fractures had occurred in 22 patients (9.1%) since diagnosis of SLE. Of these, two (9.1%) had normal BMD and 20 (90.9%) had reduced BMD, while seven (31.8%) were within the osteoporotic range. Non-Afro-Caribbean race and exposure to prednisolone .10 mg daily were significantly associated with reduced BMD, while age and menopause were associated with osteoporosis. The risk factors for fractures were reduced BMD and age. Conclusions: Reduced BMD, osteoporosis, and fragility fractures appear to be prevalent in patients with SLE. Steroids were not an independent risk factor for fractures, although their effect could be mediated through reduced bone mineral density.

Computerized data collection is acceptable to patients and feasible in clinical settings. It provides responses that are at least comparable to those to the paper form, improves data capture and is available immediately.

A minority of lupus patients with fatigue fulfil the ACR criteria for FMS. Other possible factors leading to fatigue should be considered.

Patient education is an important component of the management of chronic diseases such as SLE. We have investigated the value of the World Wide Web as a medium for delivery of SLE patient information. Volunteers recruited from the clinic and from the website completed interviews and questionnaires aimed at defining their information needs. A new website was then established and its impact on users tested using knowledge questionnaires. The new website was used extensively (20-30 users each day) over the 24 month period of study until April 2001. A total of 510 participants completed an online questionnaire that showed that for some users it was their first use of the internet to gather lupus information, but the majority (58.9%) accessed it at least monthly for this purpose. We also found that, while most users (56.9%) found current disease information was at an appropriate level, 37.5% thought it was too basic. Knowledge questionnaires from 42 participants before and after using the site showed a significant rise in users' knowledge of the areas covered by the site. As far as we are aware this study is the first to show that a patient-oriented website can have a positive effect on disease knowledge. The relative ease with which good quality information can be disseminated via the web suggests that this medium is likely to be less costly and perhaps more educationally effective than printed information, and so is likely to become a primary vehicle for patient education. The website tested can be found at: www.rheumatology.bham.ac.uk/lupus/intro.html.