‘I think it is helpful … I mean it’s not always helpful’ — diagnostic complexity in endometriosis: a qualitative study

Sharon Dixon, Emma Evans, Katy Vincent, Francine Toyé, Abigail McNiven, Hinton, Lisa
The British journal of general practice : the journal of the Royal College of General Practitioners · 2025 · vol. 75(761) , pp. e832–e842 · doi:10.3399/bjgp.2024.0799 · PMID:40562444 · W4411653239
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Abstract

BACKGROUND: Endometriosis affects approximately 10% of those assigned female at birth. Diagnostic journeys can be complex. The average 8-9 years between presenting symptoms and diagnosis has not changed significantly despite guidance. AIM: To explore primary care clinicians' diagnostic considerations in the context of symptoms that suggest possible endometriosis. DESIGN AND SETTING: Qualitative semi-structured interviews with general practice clinicians working in England. METHOD: We report a further analysis of 56 interviews from two inter-linked datasets with GPs and primary care clinicians about supporting patients with symptoms aligned with endometriosis. Analysis was informed by sociologies of diagnosis and ambivalence. RESULTS: Clinicians valued the importance of diagnoses to patients. Diagnoses support longitudinal care throughout episodes of intermittent specialist input, anticipating and responding to current and future health needs, and delivering evidence-based (biomedical) medicine. Diagnoses help clinicians feel more confident and comfortable, and may confer protection from medicolegal risk. Clinicians balanced these considerations against known uncertainties, including recognition that diagnosis might not change the treatment offered, may not be accessible if empirical trials of treatment relieve symptoms, and that an endometriosis diagnosis may not enable individualised advice or risk prediction. Potential advantages were balanced against diagnostic test risks and system pressures. Recognising that patient care remains with them, GPs anticipate and actively ensure ongoing relationships and care, whatever the outcome of tests. Holding these opposing role- based priorities and expectations in parallel creates tensions, which can be characterised through the concept of sociological ambivalence. CONCLUSION: Diagnostic considerations are complex. Educational interventions that do not recognise this may be ineffective in improving or enabling endometriosis diagnostic care journeys.

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Condition tags

mesh:D004715endometriosis

MeSH descriptors

Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis

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