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. Copyright © 2014 John Wiley & Sons, Ltd.