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Perspectives of Rheumatoid Arthritis Patients on Electronic Communication and Patient Reported Outcome Data Collection: A Qualitative Study

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Navarro-Millán I1,2, Zinski A3, Shurbaji S4, Johnson B4, Fraenkel L5, Willig J4, Danila MI6, Yun H7, Curtis JR6, Safford MM1. Arthritis Care Res (Hoboken). 2018 Apr 18. doi: 10.1002/acr.23580. [Epub ahead of print]


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1 Division of General Internal Medicine, Weill Cornell Medical College, New York City, New York.

2 Division of Rheumatology, Hospital for Special Surgery New York, NY.

3 University of Alabama at Birmingham, Birmingham, AL Department of Medical Education.

4 University of Alabama at Birmingham, Birmingham, AL Division of Infectious Diseases.

5 Yale University, Division of Rheumatology, New Haven, CT.

6 University of Alabama at Birmingham, Birmingham, AL Division of Clinical Immunology and Rheumatology.

7 University of Alabama at Birmingham, Birmingham, AL Department of Epidemiology.


OBJECTIVE: To identify the perspectives of patients with rheumatoid arthritis (RA) on electronic recording of between-visit disease activity and other patient-reported outcomes (PROs), and sharing this information with health care providers or peers.

METHODS: Patients with RA were recruited to participate in focus groups from December 2014 to April 2015. The topic guide and analysis were based on Andersen and Newman's framework. Sessions were audio recorded, transcribed, independently coded, and analyzed for themes.

RESULTS: Thirty-one patients participated in seven focus groups. Their mean age was 51 (SD 13.1); 94% were female, 52% were African Americans, 11% were Hispanics, and 37% were Caucasians. Three themes emerged: 1) provider communication, 2) information seeking about RA, and 3) social and peer support. Participants expressed willingness to track disease activity data to share with health care providers electronically if providers would act on the information. Participants envisioned symptom tracking and information sharing as a mechanism to relay and obtain reliable information about RA. Participants were also interested in electronic communication between visits if it facilitated learning about symptom management and enhanced opportunities for social support among persons with RA.

CONCLUSION: Patients with RA may be amenable to electronic collection and sharing of PRO-type data between clinical encounters if it facilitates communication with health care providers, and provides access to reliable information about RA. Providing patients with social support was important for enhancing PROs collection by helping them overcome barriers with using electronic devices and patients' reservations about the value of this data.