Co-Developing a Flexible Care Delivery Model for Inflammatory Arthritis (FlexCAre): Results from Patient Focus Groups

Objectives To improve how inflammatory arthritis (IA) care is delivered in Canada and the outcomes obtained, we are co-designing FlexCAre in partnership with adults living with IA and health care providers. FlexCAre aims to better meet the individual needs of patients and achieve better health outcomes. We conducted focus groups with adults with IA across Canada to learn about their experiences, values and preferences, informing the timing, modality, and nature of healthcare visits to optimize IA care. Methods Focus groups were held with adults in English and French. Structured online groups lasting 90 minutes used predefined questions to explore how IA care delivery could be changed to better meet their needs. Transcripts were thematically coded and analyzed to identify patterns to inform new approaches, interventions, and policy. Results The 42 adults (English n=30); French n=12) had a mean (SD) age of 64 (13) years and disease duration of 9 (15) years. They were mostly white (88%) women (88%) from BC (21%), AB (10%), ON (29%), QC (36%) and NS (5%) living in urban locations (60%). Most had RA (50%), PsA (14%), axSpA (10%), and/or other rheumatic diseases (26%). Three overarching themes were identified: (1) IA affects all aspects of life. Participants described the physical, mental, and social burden of IA and need for co-ordinated, holistic care - ideally at 1 site. They regarded nurses as essential valued team members providing clinical and psychosocial support. (2) Information needs are dynamic and often go unmet. Patients reported limited preparedness for managing their IA and have difficulty accessing timely, relevant information. They identified opportunities for improved education through online and direct engagement with different rheumatology team members. (3) Care must be individualized. Health care needs and preferences vary based on disease activity and duration, life context, and social determinants. They discussed the need to take into consideration individual circumstances and preferences in addition to results of between-visits remote monitoring. Conclusion Advances in IA treatment and access to interprofessional care have significantly improved IA outcomes for many. While physical aspects of IA can be controlled, important gaps persist with emotional and social health needs. Findings will help inform the development and initial testing of FlexCAre, a new IA care model that integrates education, remote monitoring, and flexible visit schedules to better meet the diverse needs of individuals with IA. A patient-informed approach has the potential to improve engagement, equity, and outcomes in Canadian IA care.