Conference Coverage

PRO tips: Incorporating patient-reported outcomes into routine care



Patient-reported outcomes (PROs) have the potential to transform patient care in rheumatology, according to Jeffrey Curtis, MD.

Dr. Jeffrey R. Curtis, University of Alabama at Birmingham Courtesy UAB Photo

Dr. Jeffrey R. Curtis

“You probably already use a lot of PROs in your data; even if you measure nothing via a questionnaire, you are still collecting it in a qualitative way – you just might not call it that,” he told attendees at the annual meeting of the Florida Society of Rheumatology.

The key to making the most of PROs is efficient collection of relevant, interpretable, actionable data for improving patient care and outcomes, said Dr. Curtis, professor of medicine in the division of clinical immunology and rheumatology at the University of Alabama at Birmingham.

PROs: The “what” and “why”

A wide variety of tools are available to capture PROs during daily practice, Dr. Curtis said. Active data capture tools include rheumatology- or domain-specific measures such as the Bath Ankylosing Spondylitis Disease Activity and Functional Indices (BASDAI and BASFI), the Routine Assessment of Patient Index Data 3 (RAPID3), the original and Multidimensional Health Assessment Questionnaires (HAQ and MDHAQ), as well as disease-agnostic measures like the 36-item Short Form Survey (SF-36), EuroQol-5D (EQ-5D), the Work Productivity and Activity Impairment Questionnaire (WPAI), and the National Institutes of Health Patient-Reported Outcomes Measurement Information System (PROMIS) instruments, he explained, adding that passive data also can be derived from various sources, including social media platforms, activity trackers, and reports regarding balance and falls, sleep quality and duration, heart rate and rhythm, and galvanic skin resistance.

Many of these measures represent things patients can track at home between office visits, he said.

However, such measures represent “what we could have” in terms of patient data, whereas “what we do have” falls far short of that, he noted, citing a study in which he and his colleagues found that the use of quantitative measurement for U.S. rheumatoid arthritis (RA) patients is increasing over time, but remains low with only 58% of 439 rheumatologists who responded to an email survey reporting use of such measures (J Rheumatol. 2018;45[1]:40-4).

Those using the measures were more likely to be in group practice and to prescribe tumor necrosis factor inhibitors, and the tools they reported using most often were the HAQ (35.5%) and RAPID3 (27.1%).

Reasons given for not using quantitative measurement included time constraints and electronic availability.

Of note, simulated case scenarios included in the study demonstrated that providing more quantitative information increased the likelihood that a patient would change to a different disease-modifying antirheumatic drug or biologic.

Almost anything clinically relevant can be quantified, but it’s really hard to improve and address problems you’re not measuring, Dr. Curtis said.

“I would contend that PROs are an important part of holistic rheumatology care, and they absolutely impact real and perceived treatment responses,” he added.

In fact, in a study presented at the 2018 European League Against Rheumatism Congress, he and his colleagues found that PROMIS scores with respect to pain interference, sleep disturbance, and fatigue tracked closely with RA patients’ view of their health status and with Clinical Disease Activity Index (CDAI) scores.

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