The Patient Experience: Patient-Reported Outcomes in Rheumatology

Historically, measurement of disease activity and response to therapy in the rheumatic diseases has presented significant challenges to clinicians, researchers, and patients. Disease-specific and generic instruments utilized in rheumatology have progressed over time and increasingly (although not entirely) reflect what matter to patients. Rheumatology has relied on patient-reported outcomes (PROs) perhaps more heavily than other subspecialties, as we lack specific biomarkers or gold standards such as blood pressure or hemoglobin A1c to track disease. Given the chronicity of disease and its impact on patient quality of life, work productivity, morbidity, and mortality, arriving at accurate, consistent, and feasible outcome measures for clinical practice and clinical trials is imperative. The patient experience has increasingly been recognized as central to the mission of rheumatology to achieve high-quality, high-value care.

In this issue of the Rheumatic Disease Clinics of North America , our contributors provide a wide-ranging view of PROs’ development and use in rheumatology. First, we present a review of the history of PROs in rheumatology using the Health Assessment Questionnaire as an example, followed by articles on disease-specific selection and use of PROs (including rheumatoid arthritis, lupus, psoriatic arthritis, ankylosing spondylitis, scleroderma, fibromyalgia, juvenile idiopathic arthritis, and osteoarthritis). Each of these disease-specific articles discusses relevant PRO domains and provides suggestions for instruments to assess those domains.

The final three articles address several broad topics relevant to assessment of PROs in rheumatology. As disparities in process and outcomes in the rheumatic diseases persist despite advances in treatment and treatment strategies, it is important to ensure that PROs accurately reflect the experience of all patients, including those who are most vulnerable to poorer outcomes: those with limited health literacy and limited English language proficiency. Hirsh highlights the challenges of using measures that were not developed with input from diverse populations of patients with rheumatic disease who may face barriers to communication.

Exciting progress has been made in the field of PROs in terms of technology and the use of computer- adapted testing and item response theory under the guidance of the NIH-funded Patient-Reported Outcomes Measurement Information System, or PROMIS. In the article by Wahl and Yazdany, an exploration of the intersection between quality measures and PROs is presented, and the importance of PROs to delivering quality of care to rheumatology patients worldwide is discussed. In the final article by Witter, the background of PROMIS, the technology utilized, the use of PROMIS measures in rheumatology clinical practice as well as research, and the promise of PROMIS to “enable precision, person-centered medicine” in the future.

Over the past two decades, in addition to tremendous progress in the treatment and strategies of rheumatic diseases, the field of PROs has advanced. The patient experience lies at the center of rheumatologic care. It is hoped that the standardization of PROs, their incorporation into routine practice, and quality metrics will move the field of rheumatology closer to its goal of providing high-quality, equitable care to all, in ways that matter most to patients.

We appreciate the generous contributions to this issue from authors who are experts in the field and drivers of innovation in rheumatology.

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