Development of quality indicators for systemic sclerosis patients

OBJECTIVES: To develop quality indicators for evaluating and improving care for patients with systemic sclerosis. METHODS: We developed quality indicators using a modified RAND/University of California Los Angeles Appropriateness Method. A systematic literature review identified candidate items from previous systemic sclerosis quality indicator studies and clinical practice guidelines. A multidisciplinary expert panel of 10 physicians specializing in rheumatology, dermatology, pediatrics and cardiology completed two anonymous rating rounds, with item revision after a web-based panel meeting. One physiotherapist and one patient with systemic sclerosis participated as non-voting observers. Items with a median appropriateness score of 7 or higher and strict agreement were retained. RESULTS: The review identified 86 candidate items from three quality indicator studies and 23 clinical practice guidelines. After first-round rating and discussion, 78 revised items underwent second-round evaluation. Thirty-three indicators met the prespecified selection criteria. The final set covered general management, lung, gastrointestinal, kidney, heart, pulmonary hypertension, vascular, muscle, rehabilitation, and pediatric domains. CONCLUSIONS: We developed a 33-item quality indicator set for systemic sclerosis through a structured consensus process. The indicators may support quality assessment and improvement in Japanese clinical practice.