Background Effective use of patient reported outcomes (PROs) is important for ensuring high quality care in rheumatoid arthritis (RA). The current standard of care is to measure PROs at the point of care. However, more frequent measures may provide a more accurate representation of disease activity. How best to encourage patients to report PROs outside of the clinical setting is not known.
Objectives Initiate a qualitative assessment of RA patients' preferences for engagement in PRO collection and electronic health communication outside of clinical settings.
Methods RA patients were recruited from one academic medical center to participate in a series of focus groups from December 2014-April 2015. Session topics were modeled using the Andersen and Newman Individual Determinants of Health Service Utilization Framework, emphasizing predisposing, enabling, and illness-level factors that may influence patient willingness to share data on Smartphones and the web as well as uptake and utilization of RA clinical and support services related to electronic data collection such as assistance with computer for electronic data entry. Ninety minute sessions were audio-recorded, transcribed, independently coded, and analyzed for themes in combination with post-session survey responses.
Results A total of 31 patients participated in 7 groups. Median age was 51 years, 94% Female, 52% Black, 11% Hispanic, 37% Caucasian. In post-session surveys, 58.1% of respondents were “very” or “extremely” comfortable sharing arthritis information with persons outside their healthcare team, 54.8% were very/extremely likely to use electronic or online tools to share RA information, and 64.5% reported that their RA was “high” or “essential/highest” health priority.
Preliminary qualitative data from the first two focus groups showed several predisposing beliefs, enabling factors and illness level factors (Figure). RA patients expressed willingness to logging RA disease activity data for sharing with healthcare providers and other patient generated data via Smartphone. However, few participants had experience sharing RA information or seeking support for RA outside of their family/partner, such as another RA patient or group support, to assist with understanding RA, use a computer or explain knowledge of PRO evaluation. These patients expressed willingness to participate with other RA patients in these areas to expand their knowledge.
Conclusions Incorporating these aspects and even the experience of sharing RA data information guided by another trained RA patient (peer-coach), as a facilitator for PRO collection, will help overcome some of the barriers to RA data collection expressed by patients. These aspects can improve the patient willingness to collect RA disease activity data and PRO that can lead to improvement in the clinical care of these patients.
Disclosure of Interest None declared