Barriers to Healthcare in a Multiethnic Cohort of Systemic Lupus Erythematosus (SLE) Patients: Patient and Physician Perceptions

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