February 10, 2020
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Patients with RA skeptical of patient-reported outcome measures

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Yomei Shaw

Although patients with rheumatoid arthritis expressed doubt that patient-reported outcome measures, or PROMs, could adequately express how the disease impacts their lives, such survey instruments are more effective than verbal accounts at conveying overall symptom severity, according to findings published in Arthritis Care & Research.

“PROMs are increasingly used to track the health status of patients with rheumatic diseases and evaluate the benefit of treatments in clinical trials and practice,” Yomei Shaw, PhD, of Forward, The National Databank for Rheumatic Diseases, and colleagues wrote. “Widely used PROMs in rheumatoid arthritis include rheumatology-specific measures such as the Health Assessment Questionnaire Disability Index (HAQ) and the Routine Assessment of Patient Index Data 3 (RAPID3), and measures intended for use with the general population such as the Short Form 36-item survey (SF-36) and EuroQol (EQ-5D).”

“Either because of improvements in clinical care and/or requirements for reimbursement, rheumatologists are more frequently using patient-reported outcome measures to assess the health and well-being of their patients,” Shaw told Healio Rheumatology. “We need to understand how patients perceive these PROMs and consider their strengths and limitations for capturing outcomes that are important to patients.”

To analyze the acceptability and validity of common patient-reported outcome measures used in RA, Shaw and colleagues interviewed 18 patients and compared their perceptions regarding those instruments to their verbal accounts of the impacts of their disease. According to the researchers, the 3-hour interviews were conducted as part of the Adult RA Burden of Disease study, with participants recruited from the U.S.-based Forward, the National Databank for Rheumatic Diseases.

 
Although patients with RA expressed doubt that patient-reported outcome measures, or PROMs, could adequately express how the disease impacts their lives, such survey instruments are more effective than verbal accounts at conveying overall symptom severity, according to findings.
Source: Adobe

In addition, the researchers examined patient-reported outcome data from participants’ prior responses to the Forward registry questionnaire, including information on HAQ, FACITF, EQ5D, SF36 and Visual Analog Scale (VAS) for pain, fatigue, sleep and patient global assessment. Shaw and colleagues performed a qualitative analysis of participants’ perceptions of patient-reported outcome measures, and used this to compare their prior data to their verbal accounts of pain fatigue, sleep and functional limitations.

According to the researchers, most patients were skeptical that patient-reported outcome measures could accurately account for their personal experience of symptoms and functional limitations. Specifically, participants expressed concerns about the measures underreporting symptoms and regarding how their responses would be interpreted. In addition, compared with verbal accounts, patient-reported outcome measures often did not convey the personal significance of physical limitations.

However, patient-reported measures were able to account for limitations that patients either omitted or described with insufficient detail during their interviews. In addition, although verbal accounts of pain could be categorized into multiple severity levels, the pain VAS was more effective at expressing finer gradations in pain severity.

“If you use PROMs in your research or clinical practice, it may be helpful to offer patients some guidance about what PROMs are, why they are being used, and how to approach answering them,” Shaw said. “This might help patients to feel more motivated and confident as they answer these questions, and improve the quality of your data for research and clinical care.” – by Jason Laday

Disclosure: The researchers report funding from Bristol-Myers Squibb.