Joining forces to understand what matters most: qualitative insights into the patient experience of outpatient rheumatology care
Madeleine J Bryant, Rebecca Munt, Rachel J Black, Amy Reynolds, Catherine L Hill- Rheumatology
Abstract
Objective
People with rheumatic diseases are frequent, long-term attenders of healthcare services. Their care experiences are central to improving services. This study aimed to explore real-world experiences and priorities of people attending outpatient rheumatology care, and those of healthcare professionals (HCPs) providing care.
Methods
This qualitative study comprised five semi-structured focus groups. Participants included rheumatology outpatients (n = 16) of two tertiary teaching hospitals, and healthcare professionals (n = 14) (rheumatologists, rheumatology trainees, physiotherapists, specialty nurse, 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, individualised care, information sharing, clinical excellence, patient empowerment and comprehensive care. The findings were conceptually aligned with quality standards in Australia and worldwide. Different sub-themes and prioritisation of concerns emerged from patient and HCP subgroups. Highly prioritised 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, individualisation 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 healthcare professionals. It informs a collective understanding of differing and shared priorities, positives of current care, and areas requiring change. Themes derived from this study data can be conceptualised in terms of the process, content and impact of care. Such domains can be measured longitudinally by routine implementation of validated PREMs in rheumatology.