The Journey to Diagnosis in AS/axial SpA: the Impact of Delay

Objectives: The aim of the present study was to conduct an in-depth exploration of the 'journey' to diagnosis of people with ankylosing spondylitis (AS)/axial spondyloarthritis (Axial SpA) to gain insights into the experience, potential barriers and facilitators in this process.

Methods: The present qualitative study, embedded within a prospective longitudinal cohort study, was located within an interpretive phenomenological paradigm. Ten people newly diagnosed with AS/axial SpA, reporting an average of 10.1 [standard deviation (SD) 7.3] years between experiencing symptoms and diagnosis, participated in semi-structured interviews. The interviews were recorded, transcribed and analysed thematically. Ethical approval and informed consent were obtained.

Results: Analysis identified four key themes: 'What's going on?' described the process associated with trying to understanding a changing body experience complicated by variability and the severity of back pain experienced. 'Fighting for a diagnosis' provided insights into the process of having to 'fight' to be believed and feeling dismissed by healthcare professionals. 'Being adrift' explored the negative psychological consequences associated with a search for a diagnosis. 'The start of a journey' described the relief associated with receiving a diagnosis, juxtaposed against emotions associated with the diagnosis of a long-term degenerative condition.

Conclusions: The delay in diagnosis experienced may be associated with lack of familiarity and knowledge of AS/axial SpA in the population and in healthcare professionals, and creates a multiplicity of problems, including psychological distress. Clinicians therefore need to consider the potential impact of a person's 'journey to diagnosis' on clinical management once a diagnosis has been made.