Burden of disease and real-world treatment patterns of patients with systemic lupus erythematosus in the Australian OPAL dataset.
Sabina CicirielloGeoffrey Owen LittlejohnCatherine O'SullivanTegan SmithClaire T DeakinPublished in: Clinical rheumatology (2023)
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 managed in the community setting is required.
Keyphrases
- systemic lupus erythematosus
- healthcare
- disease activity
- mental health
- primary care
- palliative care
- rheumatoid arthritis
- quality improvement
- newly diagnosed
- end stage renal disease
- electronic health record
- juvenile idiopathic arthritis
- affordable care act
- randomized controlled trial
- case report
- ejection fraction
- peritoneal dialysis
- big data
- health insurance
- emergency department
- early onset
- high intensity
- machine learning
- combination therapy
- smoking cessation
- chronic pain