Objective. Patients may be defined as nonadherent if they do not take their medications as prescribed by their physicians. Determinants of nonadherence may vary between and within patient groups. This study investigated the extent to which patients with systemic lupus erythematosus (SLE) show intentional and unintentional nonadherence, and the associations of nonadherence with psychological and medical parameters. Methods. The study included 106 patients who were receiving at least one immunosuppressive agent to control their SLE. Level of self-reported adherence and a measure of both intentional and unintentional nonadherence were obtained. Questionnaires were completed to assess associations between adherence and problems with cognitive functioning, beliefs about medicines, illness perceptions, emotional health, and disease characteristics. Results. The mean self-reported adherence rate for the total patient group was 86.7%. At least occasional intentional nonadherence was reported by 46.2% of patients and 58.5% of patients were at least occasionally unintentionally nonadherent. Problems with cognitive functioning, concerns about adverse effects of medication, and younger age were the strongest predictors of (non)adherence. Patients who were emotionally affected by their SLE were more likely to report low adherence, but this was not a significant predictor after accounting for other variables. Disease characteristics showed no relationship to measures of adherence. Conclusion. Although SLE patients reported high levels of adherence on average, they commonly reported intentional and unintentional nonadherence. Adherence was associated with both cognitions and emotions. Nonadherence may be reduced by targeting emotional and cognitive functioning and by fine tuning doctor-patient communication to address patients' individual concerns about their medications.

The results show that patients with proliferative lesions in the original biopsy rarely switch to a pure non-proliferative nephritis during a flare. Therefore, a repeat biopsy during a lupus nephritis flare is frequently not necessary if proliferative lesions were found in the reference biopsy. However, in the case of a non-proliferative lesion in the reference biopsy, class switches are frequently found and repeat biopsies are advisable.

This study investigated the influence of two different treatments for a kidney inflammation (i.e. proliferative lupus nephritis) on health-related quality of life (HRQoL) in patients with the chronic auto-immune disease systemic lupus erythematosus (SLE). One treatment protocol, the National Institutes of Health (NIH) protocol, was characterized by a high dose of cyclophosphamide (CYC, an immunosuppressive drug), and the second treatment, the Euro-Lupus protocol, involved a low-dose CYC. Thirty-two SLE patients were included based on the received treatment for an episode of proliferative lupus nephritis, according to either the Euro-Lupus or the NIH protocol. The two groups were compared on HRQoL as measured by the SF-36 and the SLE Symptom Checklist (SSC). The Euro-Lupus group (N = 16) tended to show a higher HRQoL than the NIH group (N = 16) on four of seven scales of the SF-36. In addition, the Euro-Lupus group experienced less burden from nausea or vomiting than the NIH group as assessed by the SSC. Fatigue was the most disturbing symptom in both groups. The most burdensome aspects of treatment were related to chemotherapy (55.2%) and use of prednisone (34.5%). Patients with a low HRQoL and high levels of fatigue were more likely to have low levels of serum complement C4 (i.e. elevated immune activity). In conclusion, patients who are treated according to the Euro-Lupus protocol may experience a higher HRQoL than patients who receive the NIH treatment. However, chemotherapy remains burdensome in the low-dose treatment regimen. Potential interventions to further enhance the HRQoL in SLE patients with proliferative lupus nephritis are discussed.

This study investigated the illness perceptions of patients with systemic lupus erythematosus (SLE) and whether perceptions are influenced by type of treatment for proliferative lupus nephritis. In addition, the illness perceptions of SLE patients were compared with those of patients with other chronic illnesses. Thirty-two patients who had experienced at least one episode of proliferative lupus nephritis were included. Patients were treated with either a high or low-dose cyclophosphamide (CYC) regimen (National Institutes of Health [NIH] vs. Euro-Lupus protocol). Illness perceptions were measured with the Brief Illness Perception Questionnaire (B-IPQ) and a drawing assignment. The low-dose CYC group perceived their treatment as more helpful than the high-dose CYC group. In comparison with patients with asthma, SLE patients showed more negative illness perceptions on five of the eight illness perception domains. Drawings of the kidney provided additional information about perceptions of treatment effectiveness, kidney function and patients' understanding of their illness. Drawing characteristics showed associations with perceptions of consequences, identity, concern and personal control. These findings suggest that the type of treatment SLE patients with proliferative lupus nephritis receive may influence perceptions of treatment effectiveness. In addition, patients' drawings reveal perceptions of damage caused by lupus nephritis to the kidneys and the extent of relief provided by treatment. The finding that SLE is experienced as a more severe illness than other chronic illnesses supports the need to more frequently assess and aim to improve psychological functioning in SLE patients.