Background and aims The Monash Lupus Clinic is Australia’s first multi-disciplinary specialist lupus clinic, which runs in parallel with a clinical registry program providing healthcare quality and outcomes data for research purposes. We aim to provide an overview of the characteristics and longitudinal outcomes of lupus patients treated at the Monash Lupus Clinic over the last ten years.
Methods Outcome measures included disease activity, medication use, damage accrual and other clinically-relevant events.
Results Over the last 10 years, we have observed improvements in indices associated with better healthcare quality. We observed a significant reduction in the proportion of patients with a maximum SLEDAI-2K score ≥10 over time (chi2 test for trend, p<0.001), and a significant trend of an increase in the proportion of patients spending >50% of their observed time meeting the criteria for LLDAS (chi2 test for trend, p=0.005). There was also a reduction in the proportion of patients experiencing at least one mild/moderate flare (p<0.001) or severe flare (p=0.006). We also observed a change in the medication use over the last 10 years, with a notable reduction in the use of higher doses of prednisolone (>7.5 mg/day; p=0.014).
Conclusions Running a multi-disciplinary clinic alongside research activity is both feasible and worthwhile. Systematic collection of longitudinal data on SLE patients has shown changes that reflect better control of disease. As more targeted therapies become available for the treatment of lupus, we expect that such registry data will provide valuable real world evidence of the effectiveness of treatments and management strategies.
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