The assessment of patients with rheumatoid arthritis (RA) focuses on measuring tender and swollen joints and visible signs of disability, as well as assessing patient-reported outcomes (PROs). PRO assessments can provide a nuanced perspective on how well patients are doing and how well they are responding to treatment from their own perspective. However, integrating PROs into clinical practice remains challenging.

When the signs and symptoms of RA are obvious and the disease is active and not well controlled, we do not have a problem measuring the effects of RA. Patients have tender and swollen joints, functional disability, and pain that is difficult to control. In individuals with very active disease, there is little problem with measuring and knowing whether they get better. However—and very fortunately—in modern times, our patients are doing so much better overall with the early intervention of very effective and safe medications. Some patients with RA are functioning at the highest levels that we have ever seen.

So, how do you approach assessment in patients with RA in today’s world when there might be disagreement or uncertainty regarding whether the patient is responding to one medication or another? That is where PROs come into focus. PROs may be able to tell you what is important to the patient from their own perspective. The original PRO assessment tools (eg, the Health Assessment Questionnaire [HAQ]) were created well before we had effective therapies, asking patients questions such as, “Can you get out of bed unaided in the morning, and can you get to the bathroom or go up and down a flight of stairs without holding on?” Newer PRO measures are more precise and specific and much more relevant to our current era. They include the well-researched and crafted Patient-Reported Outcomes Measurement Information System (PROMIS) scales. They can potentially bridge the gap and help differentiate between an intervention that is effective and one that is not.

How are PROs used? In addition to being used in traditional clinical trials, they are also being used in effectiveness studies conducted in community settings. For these studies, the measurements of how well the patients are doing are being done largely by the patients themselves. There are also sophisticated, wearable electronic devices available that can tell you exactly what someone is doing at any point over a 24-hour period and may potentially help you determine if there have been improvements in their functional mobility, changes in usual activities of daily living, and overall well-being associated with one intervention vs another. The latest PROs offer a new way of measuring outcomes other than just squeezing a patient’s joints and asking them if it hurts, and I think that they are likely going to be used in future drug development.

Attempts to integrate PRO assessments for RA into actual clinical care are challenging and have been met with a lot of resistance from rheumatologists. Some worried early on that they would be scrutinized or that their payment for services would be withheld if they did not use them. Research in the clinical setting is ongoing to determine the motivating factors that drive people to use PROs. I think that the sort of crude way that we collect PROs right now (ie, with the physician spending time getting them and the patient being bothered by reporting them) is not working. If we can collect the data nonintrusively and analyze them in a clinically relevant manner, I think that it would make an impact in understanding patients’ needs in clinical practice.