Background/Purpose:

It is not uncommon for 8 to 11 years to pass between symptoms onset and definitive diagnosis of AS/axial SpA (Gran 1997, Feldtkeller, 2003). We are not yet fully conversant with all of the factors influencing this delay. The aim of this study was to conduct an in-depth exploration of the ‘journey’ to diagnosis of people with AS/SpA to gain insights into the experience, potential barriers and facilitators in this process. 

Methods:

Ethical approval was obtained for a qualitative phenomenological study embedded within a longitudinal cohort study of people newly diagnosed with AS/AxialSpA in the UK. 10 participants from 2 sites meeting the inclusion criteria, gave consent to be interviewed at diagnosis utilising an in-depth semi-structured approach. Interviews were recorded and transcribed verbatim. Thematic analysis comprised an iterative, interpretative process in which a systematic and rigorous approach was used to ensure that codes, code frameworks and themes were grounded within the data, to ensure credibility and trustworthiness.

Results:

7 males and 3 females consented to participate; age mean (SD) 40.2 (7.7) years (range: 26 – 49), with reported years of symptoms before diagnosis being 10.1 (7.3) years.  Analysis identified 4 key themes:  ‘Trying to work out what was wrong’ describes the worry that was associated with knowing that something was wrong and how this was complicated by the variability and the severity of the back pain participants were experiencing. ‘Fighting for a diagnosis’ encompasses an overall sense that participants felt that their back pain was being dismissed. Participants described having to be persistent and ‘fighting’ to be referred to a specialist, and a sense that they were not being believed. ‘The impact of being given a diagnosis’ describes the contradictory emotions of relief and empowerment associated with being believed, and the worries and uncertainty about the future. ‘The impact of delayed diagnosis’ describes the negative psychological price that people paid including desperation, distress, depression and feeling disheartened.  For those in employment continuing to work had been challenging with the stigmatisation of a ‘bad back’. Insights were provided also into the emotional price paid by family members during this journey to diagnosis.

Conclusion:

These insights have identified that people endure a multiplicity of problems and psychological distress to achieve a diagnosis.  Delay in diagnosis may be associated with lack of familiarity and knowledge of AS/axial SpA by the population and healthcare professionals, highlighting the importance of campaigns to bring this condition to the public domain.  Clinicians need to consider the potential impact of the ‘journey to diagnosis’ on clinical management once a diagnosis has been made.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/the-journey-to-diagnosis-in-asaxial-spondyloarthritis-the-psychological-impact-of-delay/