Mary K. Crow, MD, physician-in-chief and chair of the Department of Medicine at Hospital for Special Surgery and chief of the Division of Rheumatology at New York-Presbyterian/Weill Cornell Medical Center, discusses the importance of measuring patient-reported outcomes (PROs) in rheumatology and about the research her colleagues are presenting at the American College of Rheumatology annual conference. 

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Video Transcript

Patient-reported outcomes have become a very important way to gain insight into outcomes of disease. What the patient experiences and is able to communicate to the physician is sometimes at least as important as the data from the lab tests that we order. 

One of our junior faculty members, Shanthini Kasturi, MD, has recently been awarded a Masters degree based on a project that she led studying the role of the PROMISSE (Predictors of Pregnancy Outcome: Biomarkers in Antiphospholipid Antibody Syndrome and Systemic Lupus Erythematosus) outcome measure in lupus patients. 

PROMISSE is a way to gain insight into disease based on the reports of patients. A series of questions are posed to patients and based on their responses, a computer then identifies the next most appropriate question to be asked. Dr Kasturi will be presenting a poster [at the American College of Rheumatology 2016 conference] that describes this work and the potential for patient-reported outcomes as an important tool for measuring outcomes in patients with rheumatic disease.

Research is extremely important in medicine. It is the way we gain insight into disease mechanisms and gain new ideas for therapeutic targets. We can then use those ideas in new drug development and new ways of managing patients. It is absolutely essential that clinicians become involved in research studies, whether by describing ideas for research studies or, and perhaps most importantly, by informing patients about participating in research. 

Patients sometimes need to understand the value of research and also how they can contribute. They are often very enthusiastic about contributing to research; therefore, I would encourage all rheumatologists to think about how their efforts can help advance research and work with their patients to participate.

There is a clear trend toward identifying patients with rheumatic disease even before they fit all of the classification criteria or diagnostic criteria for those diseases. We are very attuned to thinking about identifying patients with early inflammatory arthritis who might develop into patients with rheumatoid arthritis, as well as looking for those patients with manifestations of lupus that don’t fit the full criteria.  

Therefore, it is important for rheumatologists to be alert to the symptoms and complaints that could suggest early disease because we are learning that the earlier a disease is treated, the more likely it is to be successfully treated and even prevent more severe manifestations.

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