A University of Queensland study found that 70 per cent of global endometriosis guidelines failed to include input from people with lived experience of the condition. The international research reviewed 47 clinical guidelines across countries, uncovering widespread omissions regarding adolescents and gender-diverse individuals.
Global Guidelines Miss Patient Input
The study analyzed endometriosis guidelines from 47 countries, including 19 published in languages other than English. Researchers discovered that 70 per cent of the reviewed documents lacked input from patients living with the condition. Professor Gita Mishra of the University of Queensland’s Australian Women and Girls’ Health Research Centre stated that developing nations showed substantial gaps, particularly across Africa and the Eastern Mediterranean.
Most existing guidelines originate in high-income settings, primarily Europe, while several nations maintain no official guidance at all. Endometriosis affects roughly 10 per cent—or 190 million—women of reproductive age worldwide, involving tissue similar to the uterine lining growing outside the uterus with no known cure.
Adolescents and Gender-Diverse Patients Excluded
Despite diagnostic delays often beginning in teenage years, one-quarter of the reviewed guidelines omitted adolescent input entirely. Only one in five guidelines explicitly acknowledged gender-diverse individuals. Melbourne resident Konstandina Karavias spent seven years visiting nine health practitioners and incurring $6,000 in expenses before receiving a diagnosis at age 19, telling AAP that medical professionals repeatedly dismissed her severe pain due to her youth.
Dr Dereje Gete of the University of Queensland School of Public Health noted that while all international guidelines included gynaecologists, fewer than half consulted general practitioners. Dr Gete emphasized that general practitioners serve as the primary point of contact for patients and play a critical role in early symptom recognition.
Professor Mishra noted that Australia is leading the way with the publication of the Australian Living Evidence Guideline: Endometriosis, noting it was the first to implement a National Action Plan in 2018. Researchers intend to collaborate next with the World Health Organization to establish standardized global guidelines.
Frequently Asked Questions
Why were general practitioners excluded from most guidelines?
The University of Queensland study found that fewer than half of international guidelines included input from general practitioners, despite GPs acting as the primary point of contact for patients seeking symptom recognition and referral.
Which regions showed the largest gaps in guideline development?
Researchers identified substantial gaps in developing countries, particularly across Africa and the Eastern Mediterranean, where many nations maintain no official screening or care guidelines.
What specific populations were most frequently underrepresented in the guidelines?
The study revealed that one-quarter of reviewed guidelines omitted input from adolescents, and only one in five explicitly acknowledged gender-diverse individuals.
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