Prevalence and predictors of fragility fractures in systemic lupus erythematosus.

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 chi(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 <-1.0) 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.

Definition and treatment of lupus flares measured by the BILAG index.

OBJECTIVES: The BILAG index is a clinical measure of lupus disease activity. It is valid, reliable and sensitive to change. Scoring in the BILAG index is based upon the physician's intention to treat. A flare of active lupus is defined as a new A or B score in at least one system. The main aim of this study was to determine whether patients with a lupus flare are treated as expected from the principles upon which the scoring system was devised. Secondly we wanted to establish whether patients with a new B score preceded by a C should be considered to have flared, as with patients scoring B following a D or E score. METHODS: Over a 12-month period, 250 patients regularly attending lupus clinics in Birmingham and London were assessed using the BILAG index at each visit. RESULTS: A new A or B score was observed in 154 (61.6%) patients. An A flare was observed in 26 (10.4%) patients. A B flare (in which the B score was preceded by a D or E score) was observed in 65 (26.0%) patients. There were 63 (25.2%) patients in whom there was a B score in a system in which a C score was previously recorded. Steroids were started or increased in 20 (77%) patients with an A flare. Almost all (92%) patients with a new A score had some increase in therapy. For the patients with new B scores, 53 (41%) had some increase in therapy, but multiple reasons were found for no change in therapy in 75 (59%) of these patients. There was no difference in the treatment of new B scores arising after a previous C score compared with previous D or E scores. Non-Caucasians were more likely to have a lupus flare than Caucasians. CONCLUSIONS: 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.

Association of damage with autoantibody profile, age, race, sex and disease duration in systemic lupus erythematosus.

OBJECTIVE: To determine if there is any association between autoantibody profile and damage in a cohort of patients with systemic lupus erythematosus (SLE). METHODS: A prospective cohort of SLE patients attending two SLE clinics in Birmingham was analysed. All patients fulfilled ARA criteria for SLE. Detailed clinical and serological information was recorded at each visit. Damage according to the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (SLICC/ACR DI) was recorded 6-monthly and the last score in the year 2000 or prior to death was used in the analysis. Univariate analysis was performed with the chi(2) test, Fisher's exact test or univariate analysis of variance. Multivariate analysis was done with binary logistic regression. RESULTS: A total of 348 patients (326 females) were studied, comprising 208 Caucasians, 65 Afro-Caribbeans, 59 Asians, four Orientals and 12 others. There were 32 (9.2%) deaths and 156 (44.8%) patients had damage recorded during follow-up. The presence of damage showed no significant association with race, sex or anti-cardiolipin, anti-Ro, anti-La, anti-Sm, anti-RNP and anti-dsDNA antibodies. Only age, disease duration and other antibodies to extractable nuclear antigens (ENA) were found to be associated with the presence of damage. When individual organ damage was analysed, the only significant associations were of anti-Ro with ocular damage and of other anti-ENA antibodies (anti-Scl-70 and/or anti-Jo-1) with premature gonadal failure. Other autoantibodies were not predictive of damage in individual organs. CONCLUSIONS: Although autoantibodies are useful in diagnosis and predicting disease activity in SLE, they do not appear to be useful in predicting damage in SLE.

Development and assessment of a World Wide Web site for systemic lupus erythematosus patient information.

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.

Computerized information-gathering in specialist rheumatology clinics: an initial evaluation of an electronic version of the Short Form 36.

OBJECTIVES: Longitudinal outcome data are important for research and are becoming part of routine clinical practice. We assessed an initial version of an electronic Short Form 36 (SF-36), a well-established health assessment questionnaire, in comparison with standard paper forms, in two specialist rheumatology clinics. METHODS: Out-patients (20 with systemic lupus erythematosus and 31 with vasculitis) were randomly selected to complete either paper (n=29) or electronic and paper SF-36 versions (n=51) before and after consultation (paper vs paper comparison). Data were evaluated as the response correlation, internal consistency, missing data, patient satisfaction and preference. RESULTS: There were very good correlations in SF-36 responses (P<0.001) between the paper and electronic forms and the paper and paper forms. Internal reliability coefficients (Cronbach's alpha) showed good internal consistency for all reported responses in either computer or paper forms. There were no missing data in the computerized version but 24% of patients failed to answer all of the paper form questions. Ease of use of the computer version was rated highly by 71% of all the respondents, and 69% would prefer to use the computer version in future. DISCUSSION: 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.

Lupus patients with fatigue-is there a link with fibromyalgia syndrome?

OBJECTIVE: To determine whether fibromyalgia syndrome (FMS) was more common in patients with lupus who were complaining of fatigue. METHODS: We interviewed 216 patients attending two lupus clinics, all of whom fulfilled the revised American College of Rheumatology (ACR) criteria for lupus. The patients completed a questionnaire and were examined to determine the presence of fatigue and whether they fulfilled the ACR criteria for FMS. Disease activity was measured using the British Isles Lupus Assessment Group (BILAG) index and the Systemic Lupus International Collaborating Clinics (SLICC)/ACR damage score. Measurements of erythrocyte sedimentation rate, complement C3, lymphocyte count and DNA titre were also performed. RESULTS: Fifty per cent of our patients complained of fatigue, but only 10% of these patients fulfilled criteria for FMS. FMS did not correlate with any measure of disease activity although patients with FMS had lower mean DNA antibody titres and mean SLICC/ACR damage scores. CONCLUSION: A minority of lupus patients with fatigue fulfil the ACR criteria for FMS. Other possible factors leading to fatigue should be considered.