ABSTRACT
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.