title: The journey to diagnosis in AS/axial SpA: the impact of delay.
abstract: OBJECTIVE
  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.
authors: Wrightington Wigan and Leigh NHS Foundation Trust, Appley Bridge, UK; Lancaster University, Lancaster, UK.
authors: J
authors: J
authors: Martindale
authors: L
authors: L
authors: Goodacre
mesh_terms: D000328:Adult; D057210:Delayed Diagnosis; D004644:Emotions; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D025242:Spondylarthropathies / Q000175:diagnosis* / Q000523:psychology / Q000628:therapy; D013167:Spondylitis, Ankylosing / Q000175:diagnosis* / Q000523:psychology / Q000628:therapy; D013315:Stress, Psychological / Q000453:epidemiology
keywords: Ankylosing spondylitis/axial SpA; consequences; delayed diagnosis