A grounded theory exploration of the delays to diagnosis of endometriosis

Objective: The average time to diagnosis of endometriosis is 8 years in the United Kingdom. The objective of this doctoral qualitative study was to explore, in two phases, the reasons for the delay to diagnosis of endometriosis from both patient and healthcare professional perspectives. Design: A qualitative study involving the constructivist grounded theory method and reflexive thematic analysis. Method: Firstly, fifteen women with endometriosis underwent individual semi-structured interviews and a substantive theory to explain delay to diagnosis was generated using the constructivist grounded theory approach. Secondly, the findings from phase one informed the design of the second phase of the study where three focus groups were conducted with fifteen healthcare professionals and findings analysed using reflexive thematic analysis. Results: Initially a conceptual description of the delays to diagnosis was generated. Further analysis resulted in a novel, substantive theory; this describes how the main concern of women with undiagnosed endometriosis is coping with a fracturing life (core category), which women address through a process of ‘making sense’. The way in which a woman seeks to make sense depends upon the context of ‘refusal’, ‘disbelief’ or ‘belief’ arising from her interactions with others. Across these contexts, there is variation in the way (i) each woman perceives the credibility of the evidence of her symptoms, (ii) the way in which other people behave towards her and (iii) the power she vests in the ‘other’. Together, these factors impact on the way women seek the meaning of their symptoms and ultimately influence the time taken to diagnose endometriosis. Healthcare professionals discussed three themes: (1) endometriosis is peppered with discrimination, (2) invisible women and the invisible line for referral, and (3) visibility in a context of belief. A key finding that connected both phases of the study was the way in which clinicians rendered women invisible and how women recognised and responded to this. Conclusion: This is the first grounded theory study in the United Kingdom to offer insight into the delays to diagnosis of endometriosis. The study provides a unique understanding of the health-seeking behaviours of women with undiagnosed endometriosis as well as the ways in which clinicians render the women invisible during a consultation. A multivariate theory has been developed to explain the delays to diagnosis. This original contribution can be used to alleviate structural discrimination and encourage collaboration within and among professional bodies and patient groups to facilitate referral and diagnosis