Screening for Early Endometriosis Detection (SEED): Co-development of a Symptom-Based Screening Measure for Canadian Young Adults in Primary Care.
11 affiliations
- 1Toronto Academic Pain Medicine Institute (TAPMI), Women's College Hospital, Toronto, Ontario, Canada.
- 2Department of Anesthesiology and Pain Medicine, University of Toronto, Toronto, Ontario, Canada.
- 3Centre of Excellence for Women's Health, Vancouver, British Columbia, Canada.
- 4Department of Obstetrics and Gynecology, McMaster University, Hamilton, Ontario, Canada.
- 5Department of Obstetrics and Gynecology, Department of Anesthesiology, Perioperative and Pain Medicine, Cumming School of Medicine, Calgary, Alberta, Canada.
- 6Department of Obstetrics and Gynecology, University of Toronto, Toronto, Ontario, Canada.
- 7Department of Obstetrics and Gynecology, Sinai Health System, Toronto, Ontario, Canada.
- 8Department of Family Medicine, University of Ottawa, Ottawa, Ontario, Canada.
- 9Bruyere Health Research Institute, Ottawa, Ontario, Canada.
- 10Department of Pediatrics, BC Children's Hospital Research Institute, University of British Columbia, Vancouver, British Columbia, Canada.
- 11The Endometriosis Network Canada, Toronto, Ontario, Canada.
Abstract
Background
Many Canadians experience prolonged pain, uncertainty, and stigma before receiving an endometriosis diagnosis, with delays averaging 11 years from symptom onset. Endometriosis, defined by the presence of endometrial-like tissue outside the uterine cavity, impacts 10% of Canadian women and approximately 9% of transgender men. Existing screening measures are limited because they often focus on advanced disease and were developed outside Canada.Aims
The aim of this study is to revise the ENDOPAIN-4D screening measure to match a Canadian young adult (age 18-25) population.Methods
Using a participatory approach, the study involved four phases: an initial Delphi consensus survey with Canadian endometriosis experts; a virtual working meeting with a purposively selected subgroup; a second Delphi survey with working group members to refine proposed changes and reach consensus; and a third Delphi to collect final feedback. Participants included people with lived and living experience of endometriosis, gynecologists, pain medicine specialists focused on chronic pelvic pain, primary care providers, and other healthcare professionals involved in endometriosis care.Results
Sixty-five experts participated in the first Delphi round. Five major themes were identified: conceptual appropriateness of domains, question clarity, response option clarity, item redundancy, and simplification for a Canadian young adult audience. Fifteen experts participated in the working meeting and second Delphi round, where they refined item wording, clarified core concepts, and finalized items for the revised screening measure.Conclusions
This study adapted the ENDOPAIN-4D for Canadian young adults, resulting in a 22-item, five-domain screening measure called Screening for Early Endometriosis Detection (SEED).
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BibTeX
@article{bosma2026screening,
title = {{Screening for Early Endometriosis Detection (SEED): Co-development of a Symptom-Based Screening Measure for Canadian Young Adults in Primary Care.}},
author = {Rachael Bosma and Brittany N Rosenbloom and Adriano Nella and Lindsay Wolfson and Mathew Leonardi and Magali Robert and M Jonathon Solnik and Arun Radhakrishnan and Katelynn E Boerner and Philippa Bridge-Cook and Katelyn Luciani and Tania Di Renna},
journal = {Canadian journal of pain = Revue canadienne de la douleur},
year = {2026},
month = oct,
doi = {10.1080/24740527.2026.2729539},
url = {https://europepmc.org/article/MED/42898862},
note = {CC BY},
}
RIS
TY - JOUR
TI - Screening for Early Endometriosis Detection (SEED): Co-development of a Symptom-Based Screening Measure for Canadian Young Adults in Primary Care.
AU - Rachael Bosma
AU - Brittany N Rosenbloom
AU - Adriano Nella
AU - Lindsay Wolfson
AU - Mathew Leonardi
AU - Magali Robert
AU - M Jonathon Solnik
AU - Arun Radhakrishnan
AU - Katelynn E Boerner
AU - Philippa Bridge-Cook
AU - Katelyn Luciani
AU - Tania Di Renna
PY - 2026
DA - 2026/10/15
JO - Canadian journal of pain = Revue canadienne de la douleur
DO - 10.1080/24740527.2026.2729539
UR - https://europepmc.org/article/MED/42898862
AB - Background Many Canadians experience prolonged pain, uncertainty, and stigma before receiving an endometriosis diagnosis, with delays averaging 11 years from symptom onset. Endometriosis, defined by the presence of endometrial-like tissue outside the uterine cavity, impacts 10% of Canadian women and approximately 9% of transgender men. Existing screening measures are limited because they often focus on advanced disease and were developed outside Canada.Aims The aim of this study is to revise the ENDOPAIN-4D screening measure to match a Canadian young adult (age 18-25) population.Methods Using a participatory approach, the study involved four phases: an initial Delphi consensus survey with Canadian endometriosis experts; a virtual working meeting with a purposively selected subgroup; a second Delphi survey with working group members to refine proposed changes and reach consensus; and a third Delphi to collect final feedback. Participants included people with lived and living experience of endometriosis, gynecologists, pain medicine specialists focused on chronic pelvic pain, primary care providers, and other healthcare professionals involved in endometriosis care.Results Sixty-five experts participated in the first Delphi round. Five major themes were identified: conceptual appropriateness of domains, question clarity, response option clarity, item redundancy, and simplification for a Canadian young adult audience. Fifteen experts participated in the working meeting and second Delphi round, where they refined item wording, clarified core concepts, and finalized items for the revised screening measure.Conclusions This study adapted the ENDOPAIN-4D for Canadian young adults, resulting in a 22-item, five-domain screening measure called Screening for Early Endometriosis Detection (SEED).
SN - 2474-0527
ER -