E055 The experience of pain in patients with rheumatoid arthritis - findings from a qualitative study of REMORA app users’ experiences
Authors: Dowding Dawn , Skyrme Sarah , Masood Yumna , van der Veer Sabine N , Griffiths-Jones Deborah J , Dixon William , Sharp Charlotte A ,   On behalf of the REMORA2 team
Published: April 2024

Background/Aims

The Remote Monitoring in Rheumatoid Arthritis (REMORA) system enables people with rheumatoid arthritis (RA) to track daily symptoms, such as pain and fatigue, via a smartphone app. Graphed symptoms are made available in the electronic health record for patients and clinicians to review together during clinical consultations. REMORA aims to help patients and clinicians to understand fluctuations in disease activity and flares in between clinical appointments. Here, we discuss how patients and clinicians interacted with the data in REMORA, and if and how these interactions provided new knowledge to support person-centred care.

Methods

Patients and clinicians recruited to take part in a REMORA feasibility trial were invited to participate in this qualitative study about their experience of using the system. We conducted semi-structured interviews (in person, or via telephone or video conference) and observed clinical consultations while taking field notes. Both interviews and clinic observations were audio-recorded, transcribed, and uploaded to NVivo 12 Plus software. Thematic analysis was guided by the Theoretical Domains Framework.

Results

21 patients (of 32 consented patients who initiated symptom tracking) and seven clinicians from two study sites were interviewed. Five consultations were observed. Patients tracking their symptoms using the REMORA app highlighted how this helped them to remember periods where they had experienced pain. Clinicians were able to see where pain flares occurred. This created an opportunity for patients and clinicians to discuss pain, in turn supporting decision making around identifying and managing flares, and identifying positive responses to treatment.

Some patients expressed difficulty in knowing whether to score all the joint pain they experienced, or just pain secondary to RA. At times they found it difficult to distinguish the origin of pain which created anxiety around score accuracy. For some patients, there was a dissonance between their pain experiences and the pain scores they reported in the REMORA app. For example, sometimes they entered scores that were lower than their actual pain levels because they did not want to admit, and formalise, how bad the pain was. Reviewing these pain scores together enabled clinicians and patients to discuss and interpret the symptom scores, giving clinicians new insights into patients’ approach to their RA.

Conclusion

The REMORA system captures longitudinal symptom scores to help direct clinical management plans. Patients engaged with the pain scoring function in various ways, and pain reports submitted through the app may not always fully represent people’s actual experiences of pain from their RA and other conditions. During consultations, skilful questioning by clinicians about patient-generated data can create new insights into how an individual copes with and manages their pain and wider long-term condition.

Disclosure

D. Dowding: None. S. Skyrme: None. Y. Masood: None. S.N. van der Veer: None. D.J. Griffiths-Jones: None. W. Dixon: Consultancies; WGD has received consultancy fees from Google unrelated to this work. C.A. Sharp: None.