Codevelopment of Patient Self‐Examination Methods and Joint Count Reporting for Rheumatoid Arthritis

OBJECTIVE: To determine whether training increases accuracy of self‐reported joint counts in people with rheumatoid arthritis (RA) and describe the knowledge and techniques for self‐examination of joints for reporting of RA disease activity. METHODS: This mixed‐methods study included 10 patients with RA and four rheumatologists. A rheumatologist presented about joint inflammation and disease monitoring in RA. Patients then self‐examined and reported 28‐tender joint count (28‐TJC) and 28‐swollen joint count (28‐SJC). Next, two paired rheumatologists examined patients and reported 28‐TJC and 28‐SJC. After watching a joint examination video for training physicians, patients discussed their training needs for self‐examination, with discussion analyzed using thematic analysis. Self‐examination techniques were determined by consensus. Finally, patients self‐examined and reported 28‐TJC and 28‐SJC. Reliability between the first and second patient‐reported 28‐TJCs and 28‐SJCs and rheumatologist pair‐reported 28‐TJC and 28‐SJC was determined with the intraclass coefficient. RESULTS: The reliability for patient self‐reported joint counts was higher for the 28‐TJC than for the 28‐SJC. Reliability improved following rheumatologist examination and training. Patients identified a preference for practical information rather than detailed information on joint anatomy and pathophysiology. Clear definitions of “swollen” and “tender” were important; patients found the concept of “tenderness” difficult. Techniques for self‐examination and reporting of joint counts were agreed on and demonstrated in an instructional video. CONCLUSION: Training increased reliability of patient‐reported joint counts. Patients with RA identified important aspects of training for self‐examination and reporting of joint counts. An 8‐minute instructional video was codeveloped; the next step is the evaluation of the video’s impact on patient‐reported joint counts.