The perspective of patients with early rheumatoid arthritis on the journey from symptom onset until referral to a rheumatologist

OBJECTIVE: Timely treatment of patients with early RA (ERA) favours a beneficial disease outcome. However, individuals often delay their contact with a health-care professional (HCP) after ERA-related symptom onset. The aim of this study was to investigate the perspective of patients on the journey of a patient from RA symptom onset until referral to a specialist. METHODS: A subgroup of patients with ERA from the Care in ERA (CareRA) trial were interviewed retrospectively to discuss their initial ERA-related experiences preceding diagnosis, using a bespoke assessment form. The first section of the form focused on initial symptoms and help-seeking behaviour by the patients. The second part probed the actions of the HCPs consulted. Additional notes derived from the patient stories were analysed thematically. RESULTS: Among 94 patients, pain (97%), swelling (73%) and stiffness (52%), typically in multiple joints, were reported as initial ERA symptoms. The general practitioner (GP) was generally the first HCP to be contacted (87%). Frequently reported reasons to visit an HCP were intense pain (90.4%) and difficulties in performing daily activities (69%). In 44.1% of patients, the HCP suspected ERA at the first visit. Approximately 25% of patients needed more than five visits before detection of ERA. GPs mainly referred patients to rheumatologists (71%). Thematic analysis uncovered that multiple HCPs were often involved in the journey to RA detection and referral. CONCLUSION: Pain is the most commonly reported initial symptom of ERA and the main reason to visit an HCP, usually a GP. These GPs play a pivotal role in early detection and correct referral. Furthermore, the journey of a patient seems complex, often with multiple HCPs being involved.