Consumer Perspectives on the Australian Rheumatology Association Rheumatoid Arthritis Clinical Care Standard

ObjectiveThe Australian Rheumatology Association released Australias first Rheumatoid Arthritis (RA) Clinical Care Standard in November 2023, outlining twelve quality statements to improve RA care. Our study explores consumer perspectives on these quality statements to understand care priorities and inform the development of corresponding quality care indicators. MethodsIn the development of the Standard, a national online survey was promoted via Australian professional and consumer arthritis organisations to establish consensus with quality statements. Free-text comments from consumers were thematically analysed using NVivo 14. Related statements were grouped to identify overlapping themes, supportive care statements were analysed individually, and consumer agreement was obtained. Results605 consumer responses were received (585 people living with RA, 20 carers). Over half (N=323, 53.4%) provided free-text comments, with 1377 comments received. Key themes in pain management included poor control, the complexities of analgesia, and impacts on quality of life. For emotional and psychological wellbeing, barriers to support and the connection between physical and psychosocial wellbeing were highlighted. Self-management, barriers encountered, and benefits experienced were discussed for both physical activity and supportive resources. Delays in diagnosis or treatment and difficulty accessing rheumatologists were described for accessing specialist care. Medication concerns, shared decision-making, and disease control were key themes in disease and medication management. Consumers cited poor understanding of risks, inadequate care, and confusion about responsibility for preventative healthcare. ConclusionOur findings revealed several barriers, enablers, and impacts experienced by consumers and demonstrate that consumers value holistic and team-based care, effective communication, shared decision-making, and self-management.