Results Summary

PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.

Background

Understanding what matters to patients is important for providing patient-centered care. The Patient-Reported Outcomes Measurement Information System (PROMIS®) is a survey that asks patients what they are able to do in daily life and how they feel. PROMIS has been used for many health conditions.

Project Purpose

The researchers wanted to find out if using PROMIS during regular medical visits was practical, and if it would help to improve communication and shared decision-making for patients who have rheumatoid arthritis. Researchers have not used PROMIS with patients who have rheumatoid arthritis before.

Methods

The study included 196 patients with rheumatoid arthritis at one clinic in Baltimore, Maryland. Most were women (82 percent) and white (83 percent). One quarter (24 percent) had less than a high school education. Twenty-nine percent had rheumatoid arthritis for five years or less. Twenty-two percent were disabled.

Patients with rheumatoid arthritis answered questions from PROMIS on computer tablets or on paper forms at three or more clinician visits in a row over two years. The patients and their clinicians could see the results during their visit. To find out how using PROMIS affected regular medical visits, the researchers documented how long it took patients to complete PROMIS, the length of the medical visit, and the parts of PROMIS that were discussed by patients and their clinicians during the visit.

The researchers also talked with patients with rheumatoid arthritis and with clinical staff at the clinic. They wanted to find out about patient and clinician experiences with completing the survey and using information from it. The researchers also used information from the interviews to learn about what made taking the survey at the clinic easier or harder, and how the survey affected communication between patients and their clinicians.

Findings

Researchers found that using PROMIS during regular medical visits was practical and not a burden to patients or doctors. Patients liked using computer tablets for the survey better than paper forms.

Researchers also found that PROMIS worked well for collecting information from patients with rheumatoid arthritis.  The responses patients gave using PROMIS were in line with other measures about rheumatoid arthritis symptoms.

Clinicians told researchers that PROMIS results were helpful for quickly understanding the patient’s quality of life.  Both clinicians and patients told researchers that using PROMIS helped them to recognize and talk about problems that they did not usually discuss, such as fatigue or mood. Patients and clinicians were then able to discuss how to best treat those problems that otherwise might not have been discussed at all.

Limitations

Everyone in the study got care or worked at the same clinic. Most participants could control their rheumatoid arthritis symptoms when they started the study. Findings might be different at other clinics or with patients who have not been able to control their rheumatoid arthritis symptoms.

Conclusions

The PROMIS survey may help patients and doctors talk about how rheumatoid arthritis affects patients’ lives. It may help them work together to plan treatment during office visits, without burdening the doctors.

The next step is to test the survey with more patients and create an online patient community. The researchers want to see what changes in PROMIS scores mean in the daily lives of patients with rheumatoid arthritis.

Sharing the Results

The research team has published several articles in journals (see below) and presented the findings at national and international meetings. With further funding from PCORI, they worked with patients to tell the story of the project through text and videos.

More to Explore...

Other Dissemination Activities

Through limited competition, PCORI awarded 25 of the 50 Pilot Projects up to $50,000 to support dissemination and implementation of their activities and findings through the PCORI Pilot Project Learning Network (PPPLN) funding. The deliverables listed below are a result of convenings and conferences supported by this funding, whose efforts align with the PCORI strategic goal of disseminating information and encouraging adoption of PCORI-funded research results.

Period: August 2015 to July 2016
Budget: $48,689

Video

Produced video illustrating the experience of a patient participating in the research project

Presentations

"PRO Assessment in Clinical Practice: PCORI's Perspectives and Case Examples to Advance Research and Clinical Care"
2015 ISOQOL Meeting in Vancouver Seminar

"Integrating PROs into Routine Arthritis Clinical Care"
Johns Hopkins Welch Center Grand Rounds

Stories and Videos

Project Information

Clifton O. Bingham III, MD
Johns Hopkins University
$655,944
Integrating Patient-Centered Outcomes in Arthritis Clinical Care

Key Dates

June 2012
December 2014
2012
2014

Study Registration Information

Tags

Has Results
Award Type
Funding Opportunity Type
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 4, 2022