Screening for Early Endometriosis Detection (SEED): Co-development of a Symptom-Based Screening Measure for Canadian Young Adults in Primary Care

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).