Gaps identified in global endometriosis guidelines

A global study led by researchers at the University of Queensland has revealed that adolescents, gender-diverse individuals, and people with lived experience are inadequately represented in endometriosis care guidelines worldwide.

Examination of Global Guidelines

In the global study, which involved World Health Organization researchers, senior board members of the World Endometriosis Society, and patient group representatives, endometriosis guidelines from 47 countries were analyzed.

The analyses revealed that 19 of these guidelines were published in languages other than English, and significant shortcomings were identified, particularly in developing countries.

Lack of Patient Experience and Representation

Professor Gita Mishra from the Australian Centre for Housing, Urban and Regional Research (noting the Australian Centre for Women's and Girls' Health Research at the University of Queensland) stated that 70 percent of the reviewed guidelines were not developed with the input of individuals having lived experience of endometriosis.

Additionally, the study determined that the perspectives of adolescents were missing in a quarter of the guidelines, and only one in five guidelines explicitly recognized gender-diverse individuals.

International Differences in Treatment and Diagnosis

Marked differences in recommendations for endometriosis diagnosis, treatment, fertility care, and non-medical management globally were among the findings.

It was observed that the majority of guidelines originated from high-income regions, notably Europe, while some countries had no guidelines at all.

Future Studies and Standardization

Dr. Dereje Gete emphasized that identifying these gaps is a critical first step in addressing inequalities in global endometriosis care.

Researchers will work alongside the World Health Organization to develop standardized global guidelines in order to ensure consistency in diagnosis, treatment, and self-care.