Joining forces to understand what matters most: qualitative insights into the patient experience of outpatient rheumatology care

Objective: People with rheumatic diseases are frequent, long-term attenders of health-care services. Their care experiences are central to improving services. The aim of this study was to explore real-world experiences and priorities of people attending outpatient rheumatology care and those of health-care professionals (HCPs) providing care. Methods: This qualitative study consisted of five semi-structured focus groups. Participants included rheumatology outpatients (n = 16) of two tertiary teaching hospitals and HCPs (n = 14; rheumatologists, rheumatology trainees, physiotherapists, a specialty nurse and a pharmacist). Participants explored priorities when attending outpatient services, real experiences and aspirations for improving future care. Transcripts were coded using inductive and deductive thematic analysis. Results: Seven key themes were identified: smooth flow of technical processes, care coordination, individualized care, information sharing, clinical excellence, patient empowerment and comprehensive care. The findings were aligned conceptually with quality standards in Australia and worldwide. Different sub-themes and prioritization of concerns emerged from patient and HCP subgroups. Highly prioritized themes for patients pertained to processes and technical aspects of care. HCPs focused on themes relating to non-technical aspects of service provision: information sharing, individualization of care, patient advocacy and empowerment. Conclusion: This study captured valuable insights into the current experience of outpatient rheumatology care from the perspective of patients and HCPs. It informs a collective understanding of differing and shared priorities, positives of current care and areas requiring change. Themes derived from the study data can be conceptualized in terms of the process, content and impact of care. Such domains can be measured longitudinally by routine implementation of validated patient-reported experience measures in rheumatology. Lay Summary What does this mean for patients? This research project focused on engaging directly with people affected by rheumatological diseases to discuss their first-hand experience of attending clinics and receiving rheumatology care. The researchers were interested in views on positive aspects of the care experience, in addition to perceived shortcomings. Additionally, the group engaged rheumatology clinicians to gauge opinion on what constitutes excellent care delivery. We compared responses between the two groups, explored the data for recurring concepts and themes and looked for alignment, in addition to areas where opinions differed between the patient and clinician groups. We found that patients' experiences were dramatically affected by issues such as waiting times and lack of care continuity and these factors can erode the overall experience of receiving high-quality care. We identified that, although clinicians prioritized important issues such as information sharing and patient advocacy, often these efforts were not clearly evident to patients, and significant change is needed to improve this.