Article Text
Abstract
Background and aims Clinicians from different medical specialists are involved in the management of patients with systemic lupus erythematosus (SLE), however, unwarranted variation in practice remains largely unexplained. This study aims to describe specialists’ attitudes and perspectives on the management of patients with SLE.
Methods Face-to-face, semi-structured interviews were conducted with rheumatologists, nephrologists, and immunologists providing care to adult patients with SLE from 19 centres across Australia. All interviews were transcribed and analysed thematically.
Results The 43 participants (Table 1) identified five themes and subthemes: uncertainties in judgements (hampered by unknown and unclear aetiology, inapplicable evidence, comprehending information dispersion); reflexive responses (anchoring to speciality training, anticipating outcomes, avoiding disaster, empathy for the vulnerable); overarching duty to patients (achieving patient priorities, maximising adherence, controlling the disease, legitimate educator, having adequate and relevant expertise); safeguarding professional opportunities (diversifying clinical skills, protecting colleagues’ interests); and optimising access to treatment (capitalising on multidisciplinary care, acquiring breakthrough therapies). Illustrative quotations are provided in Table 2, and patterns and relationships among all themes are shown in Figure 1.
Participant characteristics (n=3)
Illustrative quatations
Thematic schema representing the conceptual patterns and relationships among all the perspectives and attitudes of specialists on the managent of patients with SLE. Specialists strived to achieve optimal outcomes for patients with SLE. They managed multiple roles to meet unmet needs. However, the perceived lack of high-quality evidence, and ill-defined aeitology contributed to their uncertainties in decision-making. To overcome these challenges specialists relied on their experiences gained throughout clinical training and advocated for their patients to have access to cutting-edge therapies and multidisciplinary care. Although, some felt that existing speciality silos structures restricted access to these services.
Conclusions Specialists endeavour to achieve optimal outcomes for patients with SLE but uncertainties in clinical decisions arise due to the ill-defined aetiology of SLE, lack of robust, consistent and implementable evidence, and speciality silo structures. Developing tools to support evidence-informed decisions, generating robust evidence to address clinical priorities, and establishing collaborative and multidisciplinary care pathways may support clinical decision making and management of a complex and heterogeneous disease, and help to minimise unwarranted variation in practice