Clinicians give their opinions on patient-reported outcome measures regarding both initial diagnosis and management of patients with rheumatic disease.
In this month’s feature, Rheumatology Network asked clinicians their opinions on patient-reported outcome measures (PROMs) regarding both initial diagnosis and management of patients with rheumatic disease. In part 2 of our 3-part series, we asked Arthur Kavanaugh, MD, professor and director of the Center for Innovative Therapy at UC San Diego, his opinion on PROMs as it relates to psoriatic arthritis, in which he explains that certain symptoms sometimes overlooked by clinicians may be of great importance to the patient. Next, Janet Pope, MD, MPH, division head of Rheumatology at Western University in London, Canada, focuses on rheumatoid arthritis and how to look more deeply into pain and flares to address potential underlying causes of flare. Finally, Julie J Paik, MD, MHS, assistant professor and director of Clinical Trials at Johns Hopkins Myositis Center, Division of Rheumatology, addresses the unmet needs of PROMs in myositis.
Arthur Kavanaugh, MD: They are very important in psoriatic arthritis because it is arthritis. We focus on pain, which is of great importance to the patient, which can range from peripheral arthritis, axial arthritis, enthesitis, or dactylitis. The symptom that brings the patient in to seek medical attention is the pain that they're experiencing. Other symptoms of psoriatic arthritis to pay attention to relate to the skin, for example, itch. Sometimes itch can be dismissed by rheumatologists. They may say “it’s just itch,” but it’s something that can be very important to affected patients.
Janet Pope, MD, MPH: First of all, the patient's perspective is really important. Collecting the patient-reported outcomes can tell us a rich amount of data beyond what I would ask in clinic for diagnosis because a clinical diagnosis is based on medical history, a physical, and possibly supporting labs or X-rays, all depending on what we're looking at. But to know how a patient is doing over time, many of us routinely collect their global assessment of pain and function and a health assessment questionnaire. In the US, it is also quite common to do a Rheumatoid Arthritis Disease Activity Index (RADAI), where the patient will answer some questions on how they're doing but also fill in the joints that they perceive to be bothering them or swollen. There's a huge added value to that.
We do a pain diagram every visit too. That's not standard, but it's just something our practice does. For example, if they’re saying that they have a one-sided headache, like a migraine, they might have temporal arthritis as well. I'd probably find that out in their history, but their diagram can tell me quite quickly and allows me to zone in on something else that's going on.
The patient perspective is hugely important. The patients haven't read the textbook of rheumatoid arthritis, so when they say they are experiencing a flare, you can't take it at face value. Is it swelling joints? More pain and stiffness? Is it that they’re not sleeping because they are worried about their mother having COVID and are in more pain because of poor sleep? Is it osteoarthritis, which is common in hand joints? Is it mechanical back pain or widespread pain like fibromyalgia? Is it that they’re having so much pain that they think they're flaring because they're waiting for a knee replacement? Each of these will be treated differently. We must get their perspective to do the best for the patients and collecting patient-reported outcomes is a really efficient way to do that.
Julie J Paik, MD, MHS: It's extremely important. If we, as rheumatologists, do not take account of how patients are feeling, it doesn’t matter how you design your trial. We need the patient to feel that they see an improvement with a new drug. Unfortunately, there are no good or effective patient-reported outcome measures in myositis. There is a lot of research being done in that area, and I hope there will be one shortly, but it’s not ideal. There is a definite need for more research and more extensive research.