Global inequities and fragmentation in guidelines for endometriosis: a scoping review
31 affiliations
- 1Australian Women and Girls' Health Research Centre, School of Public Health, The University of Queensland, Brisbane, QLD, Australia. [email protected].
- 2Department of Obstetrics, Gynecology, and Reproductive Sciences, University of Manitoba, Winnipeg, MB, Canada.
- 3Discipline of Women's Health, School of Clinical Medicine, The University of New South Wales, Sydney, NSW, Australia.
- 4National Endometriosis Clinical and Scientific Trials (NECST) Network, UNSW, Sydney, NSW, Australia.
- 5Australian Women and Girls' Health Research Centre, School of Public Health, The University of Queensland, Brisbane, QLD, Australia.
- 6Oxford Endometriosis CaRe Centre, Nuffield Department of Women's and Reproductive Health, University of Oxford, Oxford, UK.
- 7University of California San Francisco, San Francisco, CA, USA.
- 8Department of Obstetrics and Gynaecology, Monash University, Clayton, VIC, Australia.
- 9Department of Obstetrics and Gynecology, McMaster University, Hamilton, ON, Canada.
- 10Department of Obstetrics and Gynaecology, University of Colombo, Colombo, Sri Lanka.
- 11Department of Obstetrics and Gynecology, Stanford University School of Medicine, Stanford, CA, USA.
- 12Endometriosis Foundation of Kenya, Nairobi, Kenya.
- 13World Endometriosis Organisation, Edinburgh, UK.
- 14Endometriose Stichting, Sittard, The Netherlands.
- 15University of the Philippines Manila College of Medicine, Manila, Philippines.
- 16Department of Obstetrics and Gynecology, University of Michigan, Ann Arbor, MI, USA.
- 17Department of Basic Sciences, Ponce Health Sciences University, Ponce, Puerto Rico.
- 18Department of Obstetrics and Gynecology, Reproductive Medicine, Graduate School of Medicine, Chiba University, Chiba, Japan.
- 19Université Paris-Saclay, UVSQ, Inserm, CESP, Villejuif, France.
- 20Department of Obstetrics and Gynaecology, Maastricht University Medical Centre and Grow, research institute for oncology and reproduction, Maastricht, The Netherlands.
- 21Senior Lecturer, Department of Biochemistry, University of Nairobi, Nairobi, Kenya.
- 22Department of Clinical Sciences, Obstetrics and Gynaecology, Umeå University, Umeå, Sweden.
- 23Chair of the Board of Trustees at the Women's Health Foundation, Budapest, Hungary.
- 24University College London, Elizabeth Garrett Anderson Institute for Women's Health and University College London Hospital, Women's Health Division, London, UK.
- 25Department of Obstetrics and Gynaecology, University of British Columbia, Vancouver, BC, Canada.
- 26Flinders University, Adelaide, SA, Australia.
- 27University of Auckland and Auckland Gynaecology Group, Auckland, New Zealand.
- 28Department of Epidemiology, Harvard T.H. Chan School of Public Health, Boston, MA, USA.
- 29Centre for Reproductive Health, Institute for Regeneration and Repair, University of Edinburgh, Edinburgh, UK.
- 30Department of Sexual, Reproductive, Maternal, Child, Adolescent Health and Ageing (LHR), World Health Organization, Geneva, Switzerland.
- 31Australian Women and Girls' Health Research Centre, School of Public Health, The University of Queensland, Brisbane, QLD, Australia. [email protected].
Abstract
Background
Despite the availability of endometriosis care guidelines from multiple governmental and professional organisations, their global applicability and recommendations have been insufficiently examined. This scoping review examines endometriosis guidelines worldwide, evaluating their availability, target audiences and populations, methodologies, and clinical recommendations, building on a previous review of region-specific endometriosis care guidance.Methods
We searched PubMed, EMBASE, and Scopus from inception through October 2025 without language, publication date, or geographic location restrictions. Additional grey literature searches were conducted through March 2026. Eligible guidelines addressed individuals with suspected or confirmed endometriosis of any age, including adolescent-specific guidance and recommendations incorporating adenomyosis.Results
A total of 47 guidelines were included, comprising 28 English-language and 19 non-English-language guidelines from multiple regions. The findings reveal marked regional inequities: most guidelines originate from high-income settings, particularly in Europe (15/47, 32%), with substantial gaps in Africa (2%) and the Eastern Mediterranean (4%). Variation in inclusivity and methodological rigour was observed, including underrepresentation of adolescents (77%), individuals with lived experience (30%), and gender-diverse people (19%), as well as inconsistent approaches to grading evidence. There was also limited consideration of primary care physicians (49%), who play a key role in early diagnosis and management. Gaps in alignment across guidelines on key diagnostic and therapeutic pathways include recommendations on histological confirmation, biomarker use, aromatase inhibitors, repeat surgery, fertility care, non-medical interventions, and self-care interventions.Conclusions
These findings highlight the need for a global normative guideline, greater standardisation in guideline development methods, context-specific guidance that incorporates the needs and rights of end-users, and coordinated efforts to strengthen equitable, evidence-based care.
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BibTeX
@article{gete2026global,
title = {{Global inequities and fragmentation in guidelines for endometriosis: a scoping review}},
author = {Dereje G Gete and Devon Evans and Jason Abbott and Leticia W Ribeiro and Krina T Zondervan and Linda C Giudice and Luk Rombauts and Mathew Leonardi and Hemantha Senanayake and G David Adamson and Elsie Wandera and Femke Jansen and Sally Motlock and Angela G Sison-Aguilar and Sawsan As-Sanie and Idhaliz Flores and Kaori Koga and Marina Kvaskoff and Jacques Wm Maas and Ezekiel Onyonka Mecha and Engin Oral and Adrienn Salamon and Ertan Saridogan and Paul J Yong and Neil P Johnson and Stacey A Missmer and Andrew Horne and Manjulaa Narasimhan and Gita D Mishra},
journal = {Communications Medicine},
year = {2026},
month = oct,
doi = {10.1038/s43856-026-01907-w},
url = {https://www.nature.com/articles/s43856-026-01907-w},
note = {CC BY-NC-ND 4.0},
}
RIS
TY - JOUR
TI - Global inequities and fragmentation in guidelines for endometriosis: a scoping review
AU - Dereje G Gete
AU - Devon Evans
AU - Jason Abbott
AU - Leticia W Ribeiro
AU - Krina T Zondervan
AU - Linda C Giudice
AU - Luk Rombauts
AU - Mathew Leonardi
AU - Hemantha Senanayake
AU - G David Adamson
AU - Elsie Wandera
AU - Femke Jansen
AU - Sally Motlock
AU - Angela G Sison-Aguilar
AU - Sawsan As-Sanie
AU - Idhaliz Flores
AU - Kaori Koga
AU - Marina Kvaskoff
AU - Jacques Wm Maas
AU - Ezekiel Onyonka Mecha
AU - Engin Oral
AU - Adrienn Salamon
AU - Ertan Saridogan
AU - Paul J Yong
AU - Neil P Johnson
AU - Stacey A Missmer
AU - Andrew Horne
AU - Manjulaa Narasimhan
AU - Gita D Mishra
PY - 2026
DA - 2026/10/14
JO - Communications Medicine
DO - 10.1038/s43856-026-01907-w
UR - https://www.nature.com/articles/s43856-026-01907-w
AB - Background Despite the availability of endometriosis care guidelines from multiple governmental and professional organisations, their global applicability and recommendations have been insufficiently examined. This scoping review examines endometriosis guidelines worldwide, evaluating their availability, target audiences and populations, methodologies, and clinical recommendations, building on a previous review of region-specific endometriosis care guidance.Methods We searched PubMed, EMBASE, and Scopus from inception through October 2025 without language, publication date, or geographic location restrictions. Additional grey literature searches were conducted through March 2026. Eligible guidelines addressed individuals with suspected or confirmed endometriosis of any age, including adolescent-specific guidance and recommendations incorporating adenomyosis.Results A total of 47 guidelines were included, comprising 28 English-language and 19 non-English-language guidelines from multiple regions. The findings reveal marked regional inequities: most guidelines originate from high-income settings, particularly in Europe (15/47, 32%), with substantial gaps in Africa (2%) and the Eastern Mediterranean (4%). Variation in inclusivity and methodological rigour was observed, including underrepresentation of adolescents (77%), individuals with lived experience (30%), and gender-diverse people (19%), as well as inconsistent approaches to grading evidence. There was also limited consideration of primary care physicians (49%), who play a key role in early diagnosis and management. Gaps in alignment across guidelines on key diagnostic and therapeutic pathways include recommendations on histological confirmation, biomarker use, aromatase inhibitors, repeat surgery, fertility care, non-medical interventions, and self-care interventions.Conclusions These findings highlight the need for a global normative guideline, greater standardisation in guideline development methods, context-specific guidance that incorporates the needs and rights of end-users, and coordinated efforts to strengthen equitable, evidence-based care.
SN - 2730-664X
ER -