What are GPs perspectives, experiences and challenges when supporting patients with possible endometriosis in primary care?

Problem

Endometriosis is the second most common gynaecological condition in the UK, affecting around 1.6 million women of reproductive age, and 11% of women worldwide. In the UK, women with endometriosis typically experience a delay of approximately 7-10 years before receiving a diagnosis.Primary care is where women often first seek medical help, making this setting pivotal in women’s pathways to diagnosis and treatment.We are not aware of previous work exploring English GPs perspectives on supporting women with suspected endometriosis.

Approach

This qualitative study explores what GPs identify as important considerations when they are caring for women who present with symptoms that raise the possibility of endometriosis. We aim to undertake semi-structured interviews with 40 GPs working in England, based around a fictional scenario of a woman presenting to primary care with symptoms suggestive of possible endometriosis. We have interviewed 38 GPs from five LCRN regions to date.

Findings

Having completed 38 interviews (26 female, 12 male), we are in the initial stages of our analysis. Emerging themes include; balancing symptom control with the potential value (and risks) of further investigations, the role of primary care in supporting women with possible endometriosis, the value of on-going primary care therapeutic relationships, challenges in talking about endometriosis, and the potential advantages and risks of an endometriosis label. GPs described that shared decisions around women’s priorities (e.g. age, fertility, whether she was seeking a diagnostic label) were pivotal in navigating treatment and referral.The management of teenagers and peri-menopausal women raised uncertainties for many GPs.Resources, education and services that GPs would value included resources based on symptoms (not diagnoses), awareness raising education, clear guidance for primary care, and access to advice. Many GPs described utilising trials of treatment as both a therapeutic intervention and diagnostic tool. There may be a mismatch between how this is perceived by GPs and women. Continuity of care facilitated considering endometriosis as a possible diagnosis. If there was not continuity, strategies suggested to mitigate against delays in diagnosis included automated prompts in GP IT systems, coding suspected endometriosis, and clear written plans in GP notes.

Consequences

GPs reflections on pathways to diagnosis were primarily based around what they identified as women’s priorities. GPs described balancing the need for (and risks of) investigations and a diagnosis against adequate symptom control. Because endometriosis requires secondary care diagnosis, challenges for primary care include knowing when to consider it, when to refer, and the long-term support and management of women, once they have had a diagnosis. The potential added value of referral for a diagnosis, if symptoms were well controlled by primary care measures, was an important consideration, notably for younger women and teenagers.