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

Objective The Australian Rheumatology Association released Australia’s 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.

In 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.

605 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.

Our 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. Competing Interest Statement The authors have declared no competing interest. Funding Statement The authors have no grants or industrial support to disclose. The development of the Clinical Standard was funded by Australian Rheumatology Association. Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: Ethical approval for Working Group participation and survey participation was obtained from Central Adelaide Local Health Network Human Research Ethics Committee (No. 17784). This study involved an anonymous online survey, and no identifiable data was collected. The purpose of the study, as well as information about data use and the voluntary nature of participation, was outlined on the introductory page. Informed consent was implied through completion of the survey. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes Data Availability All data produced in the present study are available upon reasonable request to the authors.