Burden of disease and real-world treatment patterns of patients with systemic lupus erythematosus in the Australian OPAL dataset

• Published in: Clinical rheumatology 2023-11, Vol.42 (11), p.2971-2980
• Main Authors: Ciciriello, Sabina, Littlejohn, Geoffrey, O’Sullivan, Catherine, Smith, Tegan, Deakin, Claire T.
• Format: Article
• Language: English
• Subjects: Adult; Australia - epidemiology; Cost of Illness; Datasets; Demography; Diagnosis; Electronic health records; Electronic medical records; Female; Health care access; Humans; Hydroxychloroquine; Hydroxychloroquine - therapeutic use; Lupus; Lupus Erythematosus, Systemic - diagnosis; Lupus Erythematosus, Systemic - drug therapy; Lupus Erythematosus, Systemic - epidemiology; Male; Medical records; Medical treatment; Medicine; Medicine & Public Health; Middle Aged; Original; Original Article; Patients; Rheumatology; Systemic lupus erythematosus; Treatment Outcome
• ISSN: 0770-3198; 1434-9949
• DOI: 10.1007/s10067-023-06681-x

Objective To describe the demographics, disease burden and real-world management of patients with systemic lupus erythematosus (SLE) in Australian community practice. Methods Patients with a physician diagnosis of SLE and at least 1 visit between 1 January 2009 and 31 March 2021 were identified in the OPAL dataset, an aggregated collection of data extracted from the electronic medical records of patients managed by 112 Australian rheumatologists. Demographics, basic clinical features and prescribed medications were described, with medication combinations used as a surrogate of disease severity. Results Of 5133 patients with a diagnosis of lupus, 4260 (83%) had SLE. Of these SLE patients, almost 90% of patients were female, with a median age of 49 years [IQR 37–61] at first-recorded visit. Of the 2285 SLE patients whose most recent visit was between 1 January 2019 and 31 March 2021, 52.5% had mild disease, 29.9% had moderate-severe disease and 7.4% had very severe disease. Visit frequency increased with disease severity. Most patients (85.8%) were treated with hydroxychloroquine, typically prescribed as first line-of-therapy. Conclusion In this large real-world Australian cohort of patients with SLE, a substantial burden of disease was identified, with a significant proportion (almost one-third of patients) considered to have moderate to severe disease based on medication use. This study provides a greater understanding of the path from symptom onset to treatment and the heterogeneous presentation of patients with SLE who are treated in community practice in Australia. Key messages • Most published studies describing patients with SLE are derived from specialist lupus centres, typically in the hospital setting, therefore little is known about the characteristics of patients with SLE who are receiving routine care in community clinics. • The OPAL dataset is a large collection of clinical data from the electronic medical records of rheumatologists predominantly practising in private community clinics, which is where the majority (73–80%) of adult rheumatology services are conducted in Australia [ 1 – 3 ] . Since data from community care has not been widely available for SLE research, this study contributes important insight into this large and under-reported patient population. • To improve access to care and effective treatments, and reduce the burden of SLE in Australia, a greater understanding of the characteristics and unmet needs of patients with SLE man