Background: Recent evidence supports an association between systemic lupus erythematosus (SLE) and non-Hodgkin’s lymphoma (NHL). Objectives: To describe demographic factors, subtypes, and survival of ...patients with SLE who develop NHL. Methods: A multi-site cohort of 9547 subjects with definite SLE was assembled. Subjects at each centre were linked to regional tumour registries to determine cancer cases occurring after SLE diagnosis. For the NHL cases ascertained, descriptive statistics were calculated, and NHL subtype frequency and median survival time of patients determined. Results: 42 cases of NHL occurred in the patients with SLE during the 76 948 patient-years of observation. The median age of patients at NHL diagnosis was 57 years. Thirty six (86%) of the 42 patients developing NHL were women, reflecting the female predominance of the cohort. In the patients, aggressive histological subtypes appeared to predominate, with the most commonly identified NHL subtype being diffuse large B cell (11 out of 21 cases for which histological subtype was available). Twenty two of the patients had died a median of 1.2 years after lymphoma diagnosis. Conclusions: These data suggest aggressive disease in patients with SLE who develop NHL. Continuing work should provide further insight into the patterns of presentation, prognosis, and aetiology of NHL in SLE.
Objective
Systemic lupus erythematosus is an inflammatory autoimmune disease associated with high morbidity and unacceptable mortality. A major challenge for persons with lupus is coping with their ...illness and complex care. Our objective was to identify the informational and resource needs of persons with lupus, rheumatologists, and allied health professionals treating lupus. Our findings will be applied toward the development of an innovative web-based technology, the Lupus Interactive Navigator (LIN™), to facilitate and support engagement and self-management for persons with lupus.
Methods
Eight focus groups were conducted: four groups of persons with lupus (n = 29), three groups of rheumatologists (n = 20), and one group of allied health professionals (n = 8). The groups were held in British Columbia, Ontario, and Quebec. All sessions were audio-recorded and transcribed verbatim. Qualitative analysis was performed using grounded theory. The transcripts were reviewed independently and coded by the moderator and co-moderator using 1) qualitative data analysis software developed by Provalis Research, Montreal, Canada, and 2) manual coding.
Results
Four main themes emerged: 1) specific information and resource needs; 2) barriers to engagement in health care; 3) facilitators of engagement in health care; and 4) tools identified as helpful for the self-management of lupus.
Conclusion
These findings will help guide the scope of LIN™ with relevant information topics and specific tools that will be most helpful to the diverse needs of persons with lupus and their health care providers.
ObjectiveTo describe the frequency of myocardial infarction (MI) prior to the diagnosis of systemic lupus erythematosus (SLE) and within the first 2 years of follow-up.MethodsThe systemic lupus ...international collaborating clinics (SLICC) atherosclerosis inception cohort enters patients within 15 months of SLE diagnosis. MIs were reported and attributed on a specialised vascular event form. MIs were confirmed by one or more of the following: abnormal ECG, typical or atypical symptoms with ECG abnormalities and elevated enzymes (≥2 times upper limit of normal), or abnormal stress test, echocardiogram, nuclear scan or angiogram. Descriptive statistics were used.Results31 of 1848 patients who entered the cohort had an MI. Of those, 23 patients had an MI prior to SLE diagnosis or within the first 2 years of disease. Of the 23 patients studied, 60.9% were female, 78.3% were Caucasian, 8.7% black, 8.7% Hispanic and 4.3% other. The mean age at SLE diagnosis was 52.5±15.0 years. Of the 23 MIs that occurred, 16 MIs occurred at a mean of 6.1±7.0 years prior to diagnosis and 7 occurred within the first 2 years of follow-up. Risk factors associated with early MI in univariate analysis are male sex, Caucasian, older age at diagnosis, hypertension, hypercholesterolaemia, family history of MI and smoking. In multivariate analysis only age (OR=1.06 95% CI 1.03 to 1.09), hypertension (OR=5.01, 95% CI 1.38 to 18.23), hypercholesterolaemia (OR=4.43, 95% CI 1.51 to 12.99) and smoking (OR=7.50, 95% CI 2.38 to 23.57) remained significant risk factors.ConclusionsIn some patients with lupus, MI may develop even before the diagnosis of SLE or shortly thereafter, suggesting that there may be a link between autoimmune inflammation and atherosclerosis.
To determine the frequency of each American College of Rheumatology (ACR) criterion met at time of enrollment, and the increase in each of the criteria over 5 years.
In 2000 the Systemic Lupus ...International Collaborating Clinics (SLICC) recruited an international inception cohort of patients with systemic lupus erythematosus (SLE; ≥ 4 ACR criteria) who were followed at yearly intervals according to a standard protocol. Descriptive statistics were used to assess the total and cumulative number of ACR criteria met at each visit. Regression models were done to compare the increase of individual and cumulative criteria as a function of race/ethnicity group, and sex.
In all, 768 patients have been followed for a minimum of 5 years. Overall, 59.1% of the patients had an increase in the number of ACR criteria they met over the 5-year period. The mean number of ACR criteria met at enrollment was 5.04 ± 1.13 and at year 5 was 6.03 ± 1.42. At enrollment, nonwhite patients had a higher number of ACR criteria (5.19 ± 1.23) than white patients. The total number of criteria increased in both white and nonwhite ethnicities, but increased more among whites. Males had a slightly lower number of criteria at enrollment compared to females and males accrued fewer criteria at 5 years.
In this international inception cohort of SLE patients with at least 4 ACR criteria at entry, there was an accumulation of ACR criteria over the following 5 years. The distribution of criteria both at inception and over 5 years is affected by sex and ethnicity.
The goal of this work was to develop an economical way of tracking disease activity for large groups of systemic lupus erythematosus (SLE) patients in clinical studies. A Systemic Lupus Activity ...Questionnaire (SLAQ) was developed to screen for possible disease activity using items from the Systemic Lupus Activity Measure (SLAM) and tested for its measurement properties. The SLAQ was completed by 93 SLE patients just prior to a scheduled visit. At the visit, a rheumatologist, blinded to SLAQ results, examined the subject and completed a SLAM. Associations among SLAQ, and SLAM (omitting laboratory items) and between individual items from each instrument were assessed with Pearson correlations. Correlations between pairs of instruments were compared using Student’s t-tests. The mean score across all 24 SLAQ items was 11.5 (range 0 -33); mean SLAM without labs was 3.0 (range 0 -13). The SLAQ had a moderately high correlation with SLAM-nolab (r = 0.62, P < 0.0001). Correlations between patient-clinician matched pairs of items ranged from r = 0.06 to 0.71. Positive predictive values for the SLAQ ranged from 56 to 89% for detecting clinically significant disease activity. In studies of SLE, symptoms suggesting disease can be screened by self-report using the SLAQ and then verified by further evaluation.
To compare the effectiveness of tetracycline antibiotics versus control (placebo or conventional treatment) in rheumatoid arthritis (RA) for the reduction of disease activity as defined by American ...College of Rheumatology criteria.
We searched Medline (1966-February 2002), Embase (1980-February 2002), and the Cochrane Controlled Trials Register (Issue 1, 2002 Cochrane Library). Reference lists of published trials were searched by hand for further identification of published reports and presentations at scientific meetings. Randomized controlled trials comparing tetracyclines to control (placebo or conventional disease modifying antirheumatic therapy) were selected for inclusion if at least one of the following outcomes was reported: tender joint count (TJC), swollen joint count, patient pain score by visual analog scale, patient global assessment of disease activity, physician global assessment of disease activity, eosinophil sedimentation rate (ESR) and C-reactive protein (CRP), joint space narrowing and erosions, adverse events, and quality of life as measured by the Health Assessment Questionnaire. Subjects were required to have RA as defined by the 1987 ARA criteria.
Ten randomized controlled trials including 535 individuals were reviewed. Only 3 trials were considered high quality; elements of bias could not be excluded in the remainder. Tetracyclines, when administered for > or = 3 months, were associated with a significant reduction in disease activity in RA as follows: for TJC, standardized mean difference (SMD) = -0.39, 95% CI -0.74, -0.05; and for acute phase reactants, ESR, SMD = -8.96, 95% CI -14.51, -3.42. The treatment effect was more marked in the subgroup of patients with disease duration < 1 year who were seropositive. There was no absolute increased risk of adverse events associated with tetracyclines: absolute risk difference = 0.10, 95% confidence interval (CI) -0.01, 0.21. No beneficial effect was seen on radiological progression of disease: for erosions, SMD = 0.17, 95% CI -0.29, 0.64. In addition, subgroup analysis excluding trials with doxycycline showed that minocycline alone had a greater effect on reduction of disease activity: for TJC, SMD = -0.69, 95% CI -0.89, -0.49; and for ESR, SMD = -10.14, 95% CI -14.72, -5.57.
Tetracyclines, in particular minocycline, were associated with a clinically significant improvement in disease activity in RA with no absolute increased risk of side effects. Unfortunately, the information available was inadequate to allow a detailed analysis of individual side effects in the studies. Further research is warranted to compare these agents to newer disease modifying drugs for comparable safety, efficacy, and cost-effectiveness.
To evaluate the relationship between self-reported quality of life and disease activity, damage, impairment, disability, and handicap in systemic lupus erythematosus (SLE).
In this cross sectional ...study disease activity was measured with the Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) and the Systemic Lupus Activity Measure (SLAM), and damage by the Systemic Lupus International Collaborating Clinics/American College of Rheumatology (SLICC/ACR) damage index (SDI). Quality of life was assessed by the Medical Outcome Survey Short Form 36 (SF-36) and the EuroQol (EQ-5D). Multiple linear regression was used to identify significant associations of patients' health status, and logistic regression was used to evaluate the relationship of each of the 5 dimensions of the EQ-5D in terms of impairment, disability, and handicap.
Damage was associated with the Physical Function (PF) and Social Function subscales of the SF-36. Disease activity was associated with the General Health (GH) subscale. Ability to carry out usual activities was strongly related to PF and GH as well as to global rating of the thermometer rating scale of the EQ-5D. Role Physical (RP) and Bodily Pain (BP) of the SF-36 were also associated with the EQ-5D rating scale. In addition, patients' ratings of anxiety and depression were strongly related to the Mental Health (MH) summary scale of the SF-36.
Perceived health status of patients with lupus was associated with disease activity, damage, role physical, bodily pain, capacity for usual activity, and mobility. EQ-5D is a valid instrument for the measure of health related quality of life in SLE.
Asymptomatic antiphospholipid antibody (aPL) carriers with high risk for thrombosis may benefit from preventive anticoagulation. It was our objective to test whether the risk of thrombosis increases ...with: 1). increasing titres of anticardiolipin antibodies (aCL) after adjustment for other cardiovascular risk factors and 2). the number of aPL detected. In a cross-sectional study, blood was collected from clinics in two teaching hospitals. The study included 208 individuals suspected of having an aPL and 208 age- and sex-matched controls having blood drawn for a complete blood count. Clinical variables included history of previous arterial (ATE) or venous (VTE) thrombotic events, traditional risk factors for cardiovascular disease, and systemic lupus erythematosus (SLE). Laboratory variables included IgG/IgM aCL, lupus anticoagulant, and IgG/IgM anti-beta2-glycoprotein I. Mean age was 46.5 years and 83% were female. Seventy-five of the 416 participants had >or= 1 aPL, and 69 had confirmed >or= 1 ATE or VTE. Family history was positive in 48% of participants, smoking in 28%, hypertension in 16%, diabetes in 6%, and SLE in 20%. A 10-unit increase in aCL IgG titre was associated with an odds ratio (OR) 95% CI of 1.07 1.01-1.13 for ATE and 1.06 1.02-1.11 for VTE. The odds of a previous thrombosis increased with each additional aPL detected: 1.5 0.93-2.3 for ATE and 1.7 1.1-2.5 for VTE. These results indicate that increased titres of aCL and multiple aPL were associated with an increased risk of a previous thrombotic event.
Background: The measurement of the patient's experience with a condition or an illness is an important and quantifiable outcome and an example of action research. By making these concerns paramount, ...the goals and processes of health care can be redirected from anatomical and physiologic restoration to patient-oriented outcomes. At the same time, research can illuminate the complex mechanisms responsible. Methods: Critical, analytic synthesis and review of the research evaluating the ability of self-administered questionnaires to capture clinically meaningful changes. Results: Responsiveness is differentiated from sensitivity, and statistical methods for evaluating sensitivity of instruments are referenced. Techniques for evaluating whether differences in instrument sensitivity could have occurred by chance are presented, and methods for assessing a clinically meaningful change are discussed. Conclusion: Responsiveness is the key psychometric property of an instrument if it is to be incorporated into daily practice. Improving responsiveness is a major research priority.
Background: Preference-based, generic measures are increasingly being used to measure quality of life and as sources for quality weights in the estimation of Quality Adjusted Life Years (QALYs) in ...rheumatoid arthritis (RA). However, among the most commonly used instruments (the Health Utilities Index 2 and 3 HUI2 and HUI3, the EuroQoL-5D EQ-5D, and the Short Form-6D SF-6D, there has been little comparative research. Therefore, we examined the reliability and responsiveness of these measures and the Rheumatoid Arthritis Quality of Life (RAQoL) and the Health Assessment Questionnaire (HAQ) in a sample of RA patients. Major findings: Test-retest reliability was acceptable for all of the instruments with the exception of the EQ-5D. Using two external criteria to define change (a patient transition question and categories of the patient global assessment of disease activity VAS), the RAQoL was the most responsive of the instruments. For the indirect utility instruments, the HUI3 and the SF-6D were the most responsive for measuring positive change. On average, for patients whose RA improved, the absolute change was highest for the HUI3. Conclusions: The HUI3 and the SF-6D appear to be the most responsive of the preference-based instruments in RA. However, differences in the magnitude of the absolute change scores have important implications for cost-effectiveness analyses.
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