International Study Aims to Reduce Delays in Endometriosis Diagnosis

Endometriosis impacts approximately 1.5 million individuals in the UK, yet there is a significant lack of consistency in identifying the causes of diagnostic delays. An international research initiative aims to create a standardised approach to understanding the diagnostic journey and pinpointing where improvements can be made. Collaborating institutions include the University of Sheffield, University of Liverpool, University of Oxford, Aarhus University (Denmark), and the University of Edinburgh, along with Endometriosis UK.

Dr Rebecca Mawson, a National Institute for Health Research (NIHR) clinical lecturer in primary care at the University of Sheffield, is part of the investigative team. She stated, "Our project asks: where exactly are people getting lost or let down on their journey to diagnosis, and how can we map those points in a systematic way to identify where interventions could make a real difference."

The project operates under the leadership of Dr Babu Karavadra, an NIHR academic clinical fellow in general practice at the University of Liverpool, who has received a World Endometriosis Society Early Career Investigator Award for his role. Researchers plan to review existing data and gather insights from individuals affected by endometriosis while assembling an international panel to collaboratively map the diagnostic pathway and establish universally accepted definitions for critical milestones within that journey.

Particularly, the study seeks to address the experiences of demographics often overlooked in research, such as Black women, individuals from rural or economically disadvantaged areas, members of LGBTQ+ communities, and those with disabilities. Primary care, where most individuals first seek assistance for symptoms, will be a focal point of the research. Mawson emphasised the importance of this approach, noting, "If we only look at what happens once someone reaches specialist gynaecology, we risk missing some of the barriers that shape the journey long before that point."

Unlike cancer research, for which established global standards for assessing diagnostic delays exist, endometriosis research has been characterised by a disjointed approach, with various studies utilising inconsistent metrics across the diagnostic process. The research team aims to develop an "Endometriosis Diagnostic Pathway Framework" that will clarify points where patients may experience barriers and enhance healthcare delivery.

In addition, the researchers plan to introduce a visual tool called the "Snakes and Ladders" representation, illustrating how systemic barriers, chance occurrences, and individual experiences can affect the road to diagnosis.

This endeavour is part of the Primary care Endometriosis and Adenomyosis Research and Learning (PEARL) network, an international coalition of researchers and medical professionals dedicated to primary care and community health improvements. Dr Mawson remarked, "Endometriosis diagnostic delay isn’t inevitable. If we can understand where and why people are experiencing barriers, we have a much better chance of designing interventions that actually make a difference."

The framework resulting from this research has the potential to influence future studies, guide the development of clinical protocols, enhance training for healthcare professionals, and improve National Health Service (NHS) services—benefits that may extend to related conditions like adenomyosis and chronic pelvic pain.