patient care perspectives
Achieving Remission in Patients With Rheumatoid Arthritis Who Have Failed Previous Therapies
There is often a gap between how a physician assesses treatment success and the end points that are most important to the patient. Physicians tend to focus more on objective markers of disease, while patients often focus more on how the disease makes them feel.
Professor of Medicine
“Serious active listening and really showing patients that you are there for them goes a long way. This is a learned skill, and we have to effectively incorporate this into the path of care.”
We have highly effective therapies and molecular tools for the management of rheumatoid arthritis (RA), but we also must make sure that we are incorporating them in a humanistic way to make them work for our patients. Some of the most interesting work in this space is being done by John M. Davis III, MD, MS, and his colleagues at the Mayo Clinic, who have looked at a group of patients that we refer to as being “discordant.” Discordance is defined as a greater than 25% difference between what the physician identifies and what the patient identifies as how well or how poorly the patient is doing with respect to disease activity. What they have found is that patients seem to be similar in terms of controlling the inflammatory side of their disease, but there is discordance with respect to symptom assessment and how RA affects everyday life. In general, the clinical assessments that are used do not fully capture the patients’ experience. Physicians are interested in capturing objective measures such as joint counts and laboratory parameters, but patients are more interested in how they are feeling, their pain and fatigue levels, and the uncertainty that they face with this chronic disease. There can be a large gap between what patients and physicians consider to be important.
In a 2018 study assessing such discordance, these investigators reported the emergence of the following major themes: being misunderstood, limitations of provider assessments, discrepancy with provider findings, inadequate active listening by the health care providers, unmet psychosocial needs, and lack of patient empowerment. A particularly enlightening finding was that patients felt that they were not being heard in the rheumatology office setting and that the doctor was too busy with the electronic medical records. They did not feel welcome or encouraged to discuss issues. In general, I think that many patients perceive a skimpiness of empathy on the part of their rheumatology providers, and we need to do better with regard to listening to our patients. Patients are not looking for easy solutions. They often just want to be validated. They are worried about their disease, about how to pay their bills, and about whether they can keep their jobs. Serious active listening and really showing patients that you are there for them goes a long way. This is a learned skill, and we have to effectively incorporate this into the path of care. Patient-reported outcomes fit together nicely with this concept, and we rely on them in our practice.
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