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

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 on 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 the Andersen-Newman framework. Sessions were audiorecorded, transcribed, independently coded, and analyzed for themes. Results Thirty-one patients participated in 7 focus groups. Their mean +/- SD age was 51 +/- 13.1 years, 94% were women, 52% were African American, 11% were Hispanic, and 37% were white. Three themes emerged: provider communication, information-seeking about RA, and social and peer support. Participants expressed a 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 patients 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 by using electronic devices and overcome reservations about the value of these data.