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Objective Barriers to medical care may influence health status. It is unclear whether problems with access can predict clinical outcomes in lupus. This study aimed to determine whether care barriers are associated with increased disease activity and damage in a multi-center, multiethnic SLE cohort. We also compared concordance between care barriers as reported by the patient and lupus specialist. Methods Data from SLE patients in 12 Canadian centers collected at annual visits, including demographics, treatment, disease activity and damage were analyzed. Results 654 patients were enrolled with ethnic groups being Caucasian [CC] (64%), Aboriginal [ABO] (9%), Asian [AS] (21%), and Black [BLK] (6%). 50.8% had at least one barrier to care including travel to a rheumatologist (32.0%), waiting to see a rheumatologist and cost of medications. Access to medication and costs were significantly associated with co-morbidity (p < 0.001, p = 0.04). There were significant associations between ethnicity and any physician perceived care barrier < p < 0.001), mostly in Aboriginal. Doctors identified half of patients who had access to medication problems (p = 0.003) and the relationship between doctors and patients identifying similar care barriers was weak (r = 0.09). A lower total household income significantly predicted the presence of any care barrier (p < 0.001). Conclusions Despite access to a lupus specialist many care barriers were identified, although we found few associations between care barriers and patient outcomes. The cost of medication was related to SLE disease activity; however, we cannot determine if this was cause or effect. Care barriers identified by lupus patients are significantly underestimated by physicians.

Systemic lupus erythematosus is a genetically complex disease. Currently, the precise allelic polymorphisms associated with this condition remain largely unidentified. In part this reflects the fact that multiple genes, each having a relatively minor effect, act in concert to produce disease. Given this complexity, analysis of subclinical phenotypes may aid in the identification of susceptibility alleles. Here, we used flow cytometry to investigate whether some of the immune abnormalities that are seen in the peripheral blood lymphocyte population of lupus patients are seen in their first-degree relatives. Peripheral blood mononuclear cells were isolated from the subjects, stained with fluorochrome-conjugated monoclonal antibodies to identify various cellular subsets, and analyzed by flow cytometry. We found reduced proportions of natural killer (NK)T cells among 367 first-degree relatives of lupus patients as compared with 102 control individuals. There were also slightly increased proportions of memory B and T cells, suggesting increased chronic low-grade activation of the immune system in first-degree relatives. However, only the deficiency of NKT cells was associated with a positive anti-nuclear antibody test and clinical autoimmune disease in family members. There was a significant association between mean parental, sibling, and proband values for the proportion of NKT cells, suggesting that this is a heritable trait. The findings suggest that analysis of cellular phenotypes may enhance the ability to detect subclinical lupus and that genetically determined altered immunoregulation by NKT cells predisposes first-degree relatives of lupus patients to the development of autoimmunity.