Facilitating patient-centered care: the development of illustrated multidimensional patient-reported outcome measures for children/adolescents with juvenile idiopathic arthritis.

OBJECTIVES

To assess the validity, reliability, comprehensibility, and responsiveness to change of an illustrated child/parent multidimensional patient-reported outcome measures (PROMs) questionnaire which can assess construct outcome measures of children with juvenile inflammatory arthritis.

METHODS

A total of 122 children with juvenile idiopathic arthritis were included in this work in a multicenter study. The questionnaire included seven categories: (1) functional ability; (2) health-related quality of life; (3) disease activity measures: pain, global assessment, fatigue, and morning stiffness; (4) self-reported joint tenderness; (5) current medication, side effects, and adherence to therapy; (6) comorbidities; and (7) patient motivation. All the items were supported by illustrations to provide children with a visual impression of what was meant by the questions. The questionnaire has parent and patient versions. The disease activity status was assessed using JADAS-27.

RESULTS

The questionnaire was reliable as demonstrated by a high-standardized alpha (0.890-0.978). The questionnaire items correlated significantly (p < 0.01) with clinical parameters of disease activity. The patient-reported tender joints correlated significantly with the physician's scores (0.842). Changes in functional disability, quality of life, and the motivation score showed significant variation (p < 0.01) with disease activity status in response to therapy. The illustrated PROMs questionnaire showed also a high degree of comprehensibility (9.6).

CONCLUSIONS

Integrating PROMs into standard clinical practice is feasible and applicable. The illustrated questionnaire was valid and reliable. It provides an informative, quantitative measure for the disease activity score set data, and in the meantime, facilitates the assessment of the children's adherence to therapy, comorbidities, and motivation on an individual basis.