A qualitative exploration of the patient journey in axial spondyloarthritis towards a people-centered understanding

Abstract

This exploratory qualitative study aims to gain a people-centered understanding of the patient journey in axial spondyloarthritis (axSpA). Semi-structured interviews were conducted with 15 individuals diagnosed with axSpA, aged 18 years and older, who were purposively recruited from a rheumatologic practice in southern Germany. The interviews were carried out as web-based video calls between September and October 2021, audio-recorded, transcribed verbatim, and analyzed according to Kuckartz’s qualitative content analysis. Patient journey narratives encompassed both healthcare journeys and personal journeys. Healthcare journeys were characterized as fragmented and difficult to navigate, with diagnosis often marking a turning point toward more coordinated care. Post-diagnosis, new challenges emerged (e.g., time management for treatment). Personal journeys comprised perceptions of axSpA in social contexts (e.g., stigmatization) and the continuous interplay of comorbidities and biographical events with healthcare related to axSpA. This study proposes a people-centered perspective on the patient journey in axSpA, emphasizing the interplay of biographies, comorbidities, and social context with healthcare events. Recognizing these personal factors in clinical practice is encouraged to address complex health needs and tailor treatment to each individual. Further efforts should promote collaboration between medical disciplines and integrate healthcare and social support at all stages of the axSpA patient journey.