Analyzing web searches for axial spondyloarthritis in Germany: a novel approach to exploring interests and unmet needs.

Axial spondyloarthritis (axSpA) is an underdiagnosed condition with a high disease burden. Due to delayed diagnosis and limited access to specialist care, conventional health data might not sufficiently capture the perspective of affected individuals. The aim of this study was to assess public interest, unmet needs, and disease burden of axSpA in Germany through the analysis of thematic, geographic, and temporal patterns in national web search data. Google Ads Keyword Planner was used to identify axSpA-related keywords and their monthly search volume in Germany between January 2017 and December 2020. Identified keywords were qualitatively categorized into six categories. Overall, 265 axSpA-related keywords with a search volume of 3,881,490 queries were identified. Nearly 81% of the total search volume was assigned to the category terms and definition, while 19% referred to either outcomes, symptoms, diagnosis, management, or causes. In the category outcomes, prognostic outcomes like "life expectancy" generated more searches than physical manifestations like "pain". Less populated cities showed significantly more searches per 100,000 inhabitants than larger cities. Searches were seasonally stable with a Germany-wide peak in July 2017. This study provides an overview of public interest in axSpA based on web search data in Germany. The identified search patterns could be used to guide public health campaigns and optimize axSpA management in Germany.

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

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.