Background/Purpose: Telemonitoring disease activity with electronic patient reported outcomes (ePRO’s) may reduce the workload of rheumatic care by decreasing outpatient clinic visits. However, low adherence to reporting ePRO’s is frequently observed which opposes the adoption and benefits of telemonitoring. The objective here is to identify facilitators and barriers to weekly monitoring of disease activity with ePRO’s, which could ultimately be used to optimize the adherence of telemonitoring disease activity.

Methods: Patients with rheumatoid arthritis (RA), psoriatic arthritis (PsA), or ankylosing spondylitis (AS) that recently participated in one of the two telemonitoring studies with ePRO’s (SEMORA trial or DICODE cohort) were invited to participate in focus group discussions (FGD). In both studies, patients used the ‘MijnReuma Reade’ smartphone application to report a weekly modified Multidimensional Health Assessment Questionnaire (mdHAQ) that includes the Routine Assessment of Patient Index Data 3 (RAPID3). Thematic analysis identified factors to continue or stop telemonitoring disease activity.

Results: A total of 22 patients participated in three focus group discussions, of which 16 (73%) were diagnosed with RA, 4 (18%) with PsA, and 2 (9%) with AS. Mean age was 64 years (SD 10) and 12 (55%) were women. The analysis identified 7 themes and 5 subthemes (see figure 1). 1) Improved insight into the disease activity was a facilitator to continue monitoring of disease activity, while 2) experiencing no benefits from reporting ePRO’s acted as a barrier. 3) Providing a clear picture of the rheumatic disease activity was important for patients, but some questions were perceived too general, resulting that non-rheumatic symptoms could influence the results, what patients experienced as a barrier. 4) Discussing the results with their rheumatologist during outpatient clinic visits acted as a facilitator; but patients got discouraged when the results were not discussed. 5) Questionnaire frequency was a facilitator when the disease activity was high or fluctuating, but a barrier when it was low or stable. 6) Importance of a physical appointment acted as a facilitator when the consequence of reporting ePRO’s was skipping a clinic visit. However, some patients stressed the importance of physical appointments, irrespective of the severity of the disease activity. The 7) user experience acted as a barrier when patients encountered bugs with the app, but the low effort of reporting the ePRO, and prompt notifications when a new ePRO was available were facilitators.

Conclusion: The results suggest that providing patients a clear benefit from providing ePROs such as skipping visits; tailoring questionnaire frequency to disease activity; using disease specific ePRO’s; training rheumatologists in communicating ePRO results during consultations; and optimizing the user experience of the used app could be successful strategies to improve adherence to telemonitoring disease activity with ePRO’s.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/facilitators-and-barriers-to-weekly-monitoring-of-disease-activity-with-electronic-patient-reported-outcomes-a-focus-group-study-of-patients-with-inflammatory-arthritis/