Patients Are Willing to Report Pain, but Only If Providers Use the Information to Improve Care

Kelly Davio

Primary care clinics are beginning to integrate more patient-reported outcomes (PROs) into practice, especially with implementation of the Patient-Reported Outcome Measurement Information System (PROMIS). However, little is known about whether patients perceive reporting these outcome measures as useful. Researchers from the Regenstrief Institute recently conducted a mixed-methods study that sought to assess patient attitudes toward PROs for symptoms including pain, which found that patients are willing to discuss their pain with their physicians via a formal reporting system, but they are reluctant to do so if they believe that their clinicians will not use that information to improve care.

The study, results of which have recently been published in Quality of Life Research, was part of a larger clinical trial examining the effects of the PROMIS platform on patient outcomes representing the SPADE pentad: sleep issues, anxiety, pain, depression, and low energy. From March 2016 to September 2016, 23 patients, ranging in age from 24 to 77 years, who had at least 1 SPADE symptom, agreed to provide in-depth interviews about their views on PROMIS. Pain was the most commonly reported symptom among patients, and an advisory panel, comprising 3 patients with chronic pain, reviewed survey questions before the interviews were administered. Patients responded to questions about the utility, implementation, and display of PROs in PROMIS.

According to the authors, 5 themes emerged from interviews with the patients: first, symptom-based PROs can foster communication between patients and providers, especially for patients who may not feel comfortably verbally disclosing their symptoms or who may need a prompt to recall symptoms. Second, data from PROs may prompt clinical actions, and patients expected providers to take action or further monitor patients on the basis of the PROs reported. Third, a visual display of symptoms could be useful for patients and providers to see, although only if the data are rendered in an understandable way. Fourth, implementation may be affected based on whether PROs are collected via tablet or paper. Finally, PROs are only useful to the extent that they are used, and patients were reluctant to commit to routinely answering PRO questions because they questioned whether their providers would actually review their responses.

“Patients see both personal and clinical benefits in routinely completing questionnaires about symptoms they are experiencing,” said Regenstrief Institute research manager Tasneem Talib, PhD, lead author of the study, in a statement. “While they understand that their doctors see a lot of patients, they don’t want to feel like a number. They want their doctors to actually review and use the information they are providing.”

In order to truly link PROs with patient-centeredness, wrote the authors, both patients and their providers will need to be committed to providing and using the data collected. Future research, write the authors, will be necessary to determine how to best use PROs in improving the quality of patients’ care.

Talib TL, DeChant P, Kean J, et al. A qualitative study of patients’ perceptions of the utility of patient-reported outcome measures of symptoms in primary care clinics. Qual Life Res. 2018;27(12):3157-3166. doi: 10.1007/s11136-018-1968-3.
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