Patient-Reported Outcomes in Rheumatic Diseases

Michael H. Weisman, MD, Consulting Editor
Barton and Katz have assembled an issue that will be a standard reference for the near future. Their experts show clearly the value of patient-reported outcomes (PROs) in SLE precisely because the disease is extraordinarily complex, and hence, patient input is especially relevant. Similar issues are in play for psoriatic arthritis, since what patients think is important may vary widely from physician assessment. Nowhere could the impact of disease be more potentially devastating than in systemic sclerosis, where patient experience must be paramount. Juvenile arthritis is a special case because of the need to understand the patients, parents, and parent-proxy perspective approach to appraisals of health care decision-making. A very thoughtful article describing the issues of literacy and English proficiency on health outcomes gives some important insights into the challenges of health care disparities. The impact of patient-reported outcomes in the arena of quality assessment is discussed, keeping in mind the challenges posed in the United States by the variability of information technology infrastructures and the diversity of our patient populations. Clearly, the burden of fibromyalgia and knee OA are best captured by PROs, and for rheumatoid arthritis, the PRO has had an almost unchallenged high-ranking status as a meaningful assessment of the impact of this disease. In recent years, PROs are becoming an important aspect of axial spondyloarthritis following the lead of our European colleagues, who have used quite rigorous methodologies to categorize the patient experience with this common chronic disease. PROMIS, or patient-reported outcomes measurement information system, standardizes the collection of universally relevant domains of health and disease into one instrument that can capture outcomes across diseases and clinical settings—a major research advance that is bearing fruit as we speak. Finally, the evolution of PROs in Rheumatology from its controversial research applications in the beginning to their evolution as part of routine care is discussed with great thoughtfulness.

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Sep 28, 2017 | Posted by in RHEUMATOLOGY | Comments Off on Patient-Reported Outcomes in Rheumatic Diseases
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