PROs: Which Are Important to Patients and How Successfully Are They Integrated Into Clinical Care?

Although patient-reported outcomes (PROs) are increasingly being used to understand treatment effectiveness, there is still a lot unknown about what measures patients find most important. Two abstracts presented at the American College of Rheumatology’s annual meeting evaluated PROs in rheumatology and how PRO measures can be used in clinical care.

The ArthritisPower registry invited patients with rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, systemic lupus erythematosus (SLE), osteoporosis, osteoarthritis, or fibromyalgia to select up to 10 PRO measures they felt were important to track.¹ A total of 251 participants completed baseline assessments, the majority of whom were female (89.6%) and white (91.2%).

Participants were given the opportunity at 3 separate times to continue tracking the PRO measures they selected or choose new measures. At the end (month 3), participants completed an exit survey.

The majority of patients who participated had osteoarthritis (64.1%), followed by rheumatoid arthritis (49.0%) and fibromyalgia (40.6%). The top 3 PRO measures chosen at baseline were fatigue (84.1%), mental health (82.1%), and pain (81.7%).

“These findings provide insights into symptoms rheumatology patients find most important and will be useful to inform the design of future patient-centric clinical trials and real-world evidence generation,” the authors explained.

In the second abstract, the researchers used structured interviews with clinical rheumatologists affiliated with academic medical centers to identify the main benefits and barriers to the use of PRO measures in clinical care.

They interviewed a total of 15 attending rheumatologists who had a median of 15 years in practice. More than half (53%) reported a specific interest in SLE. Among the responses they gave regarding uses and benefits of PRO measures in clinical care were:

• “I use the information in combination with my clinical observation and impression of the patient because sometimes there’s discrepancies.”
• “…sometimes depending on people’s coping mechanisms, you might have a misguided sense of really what their quality of life is.”
• “To have the information gathered for you, it just allows you to hone in on what seems to be most important for that particular patient.”

Among the barriers and challenges:

• “I think I get to the same questions without doing it in a formal way…I think I get to the point, the questions that I need to ask for patient care what I think of [PRO measures] more as for studies.”
• “It’s very difficult to change their culture or how physicians practice, or before practicing, just to bring something new to patient care.”
• “The doctor feels like they just barely have enough time to address all the other important issues, which the patient may not think that’s important at the time; it’s always the main issue here.”
• “Absent context there’s no kind of anchoring for [score interpretation]. It can be very high in that different people give very different disparate answers based on—I don’t know—all kinds of reasons.”

“Programs seeking to successfully integrate [PRO measures] to enhance patient-centered care and meet quality benchmarks must prioritize physician buy-in and training, and provide resources to address the outcomes that are measured,” the authors concluded.

References

1. Nowell WB, Gaich C, Gavigan K, et al. Understanding which patient-reported outcomes are important to rheumatology patients: findings from ArthritisPower. Presented at: The American College of Rheumatology Annual Meeting, November 8-13, 2019; Atlanta, Georgia. Abstract #0435.
2. Kasturi Shanthini, Wong J, Mandl L, McAlindon T, LeClair A. Implementing patient-reported outcome measures in clinical care: rheumatologist perspectives on opportunities and challenges. Presented at: The American College of Rheumatology Annual Meeting, November 8-13, 2019; Atlanta, Georgia. Abstract #0834.