‘The hinterland between symptoms and diagnosis’: navigating diagnosis of possible endometriosis in general practice

Problem

Endometriosis affects up to approximately 10% of those assigned female at birth, and can be associated with symptoms including potential pelvic pain and subfertility.

The average interval between symptoms and diagnosis is 8 years, which is unchanged over the last decade. Delays in diagnosis are pivotal in endometriosis discourse and identified as critical in health policy, including an All Party Parliamentary Group, and the Women’s Health Strategy.

Primary care is often characterised as pivotal in creating and maintaining delays in diagnostic care pathways, in a research field dominated by specialist care and research. Many conclude that lack of GP awareness drives this, however our qualitative interviews with GPs challenged the simplicity and reductive nature of this assumption.

Approach

Secondary analysis of 42 GP interviews about possible endometriosis, and 46 interviews with primary care clinicians about supporting women’s health in primary care, conducted with comparable methods (semi-structured telephone interviews, transcribed verbatim, analysed thematically utilising Nvivo12) within the same research team. Our secondary analysis utilised sociological theories of diagnosis and ambivalence.

Findings

Diagnosis is valued by clinicians as desirable in a biomedical model of care, for example in enabling longitudinal care in a context of punctuated episodes of specialist input, in enabling advocacy for patients and in accessing evidence-based medicine. Clinicians also valued having a diagnosis for themselves, as a tool to support their work and to afford some protection from risk. They also recognised and valued the importance and possible roles of diagnoses for their patients, including symptom validation.

However, they hold these considerations alongside uncertainty about how, when, and whether diagnoses help in endometriosis and pelvic pain. This includes recognition that the diagnosis may not change the treatment offered, especially if empirical trials of treatment are effective in relieving symptoms. They balance potential advantages with the knowledge that the tests themselves are associated with risks. They know (not don’t know) that diagnosis may not inform prognostication about or influence outcomes, including those identified as important to patients such as future fertility or pain. They recognise the lack of primary care evidence or evidence to allow for personalised advice. Recognising that care remains with them, whatever the outcome of tests, they actively offer tests to ensure they enable ongoing care whether a diagnosis is identified – or not.

Consequences

We develop thinking about meanings of diagnosis for clinicians, an area with scant previous consideration, where most literature focusses on societal and patient perspectives.

We suggest that for primary care clinicians, seeing patients with undifferentiated symptoms that may suggest endometriosis, holding these perspectives in parallel creates potential ambivalence about diagnosis. The complexity of their considerations suggests that reductive educational messaging, pivoted predominantly around awareness raising, will not likely alone be sufficient to generate change.