Usefulness of the illustrated patient-reported outcome tool ‘Okomarigoto Sheet’ for symptom expression and communication in patients with rheumatoid arthritis

Objectives: This study aimed to evaluate whether the 'Okomarigoto Sheet' (OS), an illustration-based tool for patients with rheumatoid arthritis (RA), correlates with conventional measures and elicits patient symptoms. Methods: The OS includes 3 symptom scales: morning stiffness duration, and visual analogue scale (VAS) for joint pain and VAS for fatigue. Five illustrations depicting 5 different situations for each symptom were also scored (0 = none, 1 = present, and 2 = severe, respectively). Patients with RA were recruited from 4 Japanese clinics. Correlations between the OS and conventional RA-related measures were assessed using Spearman's rank correlation. Results: Eighty patients with RA participated in this study. The total score of all 15 illustrations positively correlated with the Disease Activity Score using the Clinical Disease Activity Index and negatively with the physical and mental component scores of the Short-Form-12. Stiffness duration, pain VAS, and fatigue VAS were each positively correlated with the respective total of 5 illustrations. Among patients scoring 0 on stiffness duration, pain VAS, or fatigue VAS, a total of 10 patients showed symptoms in the corresponding illustrations. Patient global assessment (PGA) was correlated with the total score of 5 illustrations for each of the 3 symptoms, whereas evaluator global assessment (EGA) correlated only with those for stiffness and pain, not fatigue. Conclusions: The OS reflected standard measures of disease activity and quality of life. It also has the potential to clarify symptoms that are not captured by conventional measures. Furthermore, the OS suggested that fatigue may be one of the factors contributing to the discrepancy between PGA and EGA.