Incorporating Patient-Reported Outcomes into the Clinic

The ACR’s quality measures for care include gauging disease activity and functional status via patient-reported outcomes (PROs) and clinical assessments during routine care.¹ But how do rheumatologists effectively incorporate PROs into a clinic visit?

Christie Bartels, MD, MS, chief of the Division of Rheumatology and associate professor in the Department of Medicine, University of Wisconsin School of Medicine and Public Health, Madison, notes that PROs are defined by the National Institutes of Health’s National Cancer Institute as “information about a patient’s health that comes directly from the patient.” Examples of PROs, under that definition include “a patient’s description of their symptoms, their satisfaction with care and how a disease or treatment affects their physical, mental, emotional, spiritual and social well-being.”²

“Many of us informally integrate patient reports in routine clinic discussions, where we know that if patients are able to participate in hobbies, like golfing or painting, that they must be feeling well. Routine PRO collection takes it a step further to say that the patient’s scaled reporting of pain, mood or quality of life (QOL), for instance, are just as important as, say, swollen or tender joint counts,” Dr. Bartels says.

PROs “can help guide treatment plans that respond to patients’ lived experiences, which can improve quality of care, adherence and outcomes,” Dr. Bartels continues. “An important set of PROs is mental and emotional well-being, including symptoms of depression or anxiety. Rheumatology literature shows these symptoms are common and often correlate with high pain scores that are out of sync with objective disease activity scores or swollen or tender joint counts, for example. Chronic disease literature shows that diagnosing and concomitantly treating depression and anxiety can improve patient disease-related outcomes and overall QOL.

“In rheumatology, recent publications show higher rates of patient-reported depression in rheumatoid arthritis (RA), psoriatic arthritis and lupus than in peers, and recently a panel of patient experts advocated screening for depression at least annually in lupus care as a proposed quality measure,” Dr. Bartels adds.

PRO Measures

Dr. Yazdany

Jinoos Yazdany, MD, MPH, chief of the Division of Rheumatology at Zuckerberg San Francisco General Hospital and the Alice Betts Endowed Professor of Medicine at the University of California, San Francisco, explains that the PRO is the outcome, such as a patient reporting poor physical function, and the patient-reported outcome measure (PROM) is the method/measure used to collect that outcome. For example, for patients with RA, clinicians may use the Multi-Dimensional Health Assessment Questionnaire (MD-HAQ) or the Patient-Reported Outcomes Measurement Information System Physical Function 10-item (PROMIS PF10a) questionnaire to assess function in a standardized way.

Collecting PROMs around function is a national quality measure for RA, lupus and psoriatic arthritis, according to Dr. Yazdany.

“PROMs are validated tools, typically surveys, used to capture patients’ perceptions of their health, such as QOL, functional status or pain,” says Dr. Yazdany. “They are a key tool for centering clinic visits and care around the patient’s personal experience and to ensuring that this experience is prioritized when discussing management.”

Patient Experience

“Although some aspects of what is covered in PROMs can be obtained from the history, PROMs are powerful in that they standardize collecting information about the patient’s experience, can be tracked longitudinally in a quantitative way and reflect state-of-the-art science in terms of soliciting information about symptoms,” Dr. Yazdany says.

In RA, lupus and other rheumatic diseases, functional status PROMs are significant predictors of “how the patient is doing and their prognosis,” Dr. Yazdany says, noting that PROMs indicate “responsiveness to improvements in inflammatory disease activity, but they also capture the patient’s experience of illness, which may be influenced by other factors, including depression, poor sleep or noninflammatory pain.”

In treating the whole patient, she notes, “It is important to understand fluctuations in PROMs over time and to investigate the underlying causes to help patients improve their function.”

“PROMs help us gain a more detailed, patient-centered understanding of the patient’s experience of their illness, as well as their trajectory,” Dr. Yazdany says. “Importantly, in qualitative studies, patients tell us that they love when their doctor discusses PROM results with them and when they can track their progress through PROMs over time.”

Capturing Data

A 2024 study by Dr. Bartels, Dr. Yazdany and others found that integrating PROs into electronic health records (EHRs) presented a challenge for U.S. rheumatology practices.³ The researchers interviewed 38 participants, identifying gaps in the collection of RA outcome measures. The findings helped develop the ACR’s RA Measures Toolkit, an online resource intended to improve workflow efficiency and patient care.

Dr. Bartels

“Collecting the data for PROs can be a challenge, but capturing PROs can be as simple as short questions or paper questionnaires during clinic check-in or via patient portals or tablets before or during clinic visits,” Dr. Bartels explains.

In 2024, Dr. Yazdany et al. reviewed whether artificial intelligence (AI) could improve clinical decision making in RA.⁴ The authors suggested that large language models could enhance RA treatment by reducing the clinician workload when interacting with the EHR.

“We are trying to use digital technologies to make the collection, capture and use of PROMs as seamless as possible for rheumatologists,” states Dr. Yazdany. “For example, we are using AI to extract PROMs from clinical notes because entering this information in structured data fields is very time consuming. We are using AI to predict PROM trajectories for individual patients and to simulate these trajectories with different treatment choices.”

The hope is that “one day these tools will help with shared decision making regarding treatment plans, including recommendations for therapy changes and other interventions, such as exercise or physical therapy that might improve outcomes,” says Dr. Yazdany.

Clinical Integration

Most rheumatologists in the U.S. collect PROMs, notes Dr. Yazdany. Therefore, we are “ahead of most other specialties in this area.” The next decade will hopefully allow us to use PROMs “as the basis for digital tools that improve outcomes for people with rheumatic diseases.”

Still, Dr. Bartels notes, “Few groups routinely collect PROs beyond pain scores or RA RAPID3 [Routine Assessment of Patient Index Data 3] scores for instance, and those that do collect PROs more widely (e.g., PROMIS scales) often struggle to integrate and act on data.”

“Based on what we are learning, we are changing approaches,” Dr. Bartels says. “First, we are looking for crosscutting measures, like functional assessment, that are relevant across conditions to a) focus on function as a key outcome and b) to reduce the reporting burden for clinics and patients.

“Second, for a recent Centers for Disease Control and Prevention-funded ACR lupus project, we created a resource bundle to support collecting PROs in clinics around depression and acting on them. This included working with patients to pick PROs that mattered, and working with practices on paper or EHR collection strategies.”

Finally, she notes, “We are sharing best practices on what to do with adverse PROs once collected, to truly be patient centered. Some practices updated lists of community counseling services accepting patients to respond to depression screenings, others shared physical therapy or exercise options to respond to poor function.

“It’s exciting to use PROs to get closer to how the World Health Organization describes health: ‘A state of complete physical, mental and social well-being and not merely the absence of disease or infirmity,’”⁵ concludes Dr. Bartels.

Katie Robinson is a medical writer based in New York.

References

1. Clinical Tools. Quality Measurement. American College of Rheumatology.
2. Patient-reported outcome. National Institutes of Health. National Cancer Institute.
3. Nasrallah C, Schmajuk G, Hamblin A, et al. Leveraging the consolidated framework for implementation research to develop the American College of Rheumatology’s Toolkit for Implementation of Rheumatoid Arthritis Outcome Measures in Clinical Practice: A qualitative study. Arthritis Care Res (Hoboken). 2024 Dec;76(12):1647–1656.
4. Garcia-Agundez A, Schmajuk G, Yazdany J. Promises and pitfalls of artificial intelligence models in forecasting rheumatoid arthritis treatment response and outcomes. Semin Arthritis Rheum. 2025 Feb:70S:152584.
5. Health and well-being. World Health Organization.