Consensus on Symptom Selection for Endometriosis Questionnaires: A Modified e‐Delphi Study

OBJECTIVE: To build consensus on most important symptoms and related consequences for use in questionnaires to characterise individuals with suspected and confirmed endometriosis in the general population. DESIGN: A questionnaire of 107 symptoms and related consequences of endometriosis was collaboratively developed by patients, medical doctors and researchers and further assessed in a two-round e-Delphi study. Participants assessed the relevance of the symptoms, and a priori it was decided that 70% was the threshold for inclusion of a symptom. SETTING: Participants represented 7 countries, including Australia, Denmark, France, Hungary, the United Kingdom, the United States, and Turkey. POPULATION: Individuals with endometriosis, medical doctors and researchers with expertise in endometriosis. METHODS: A modified e-Delphi study. MAIN OUTCOME MEASURES: Consensus-based selection of symptoms for endometriosis questionnaires. RESULTS: Seventy-six participants completed the first Delphi round and 65 completed the second round. Four symptoms met consensus in the first round (menstrual pain, pain during sexual intercourse, cyclic pain during defecation, and infertility), with two additional symptoms reaching consensus in the second round (cyclic pain and increased doctor/health care contacts for abdominal/pelvic pain). CONCLUSION: This study highlighted six symptoms relevant for inclusion in endometriosis research questionnaires: menstrual pain, pain during sexual intercourse, cyclic pain during defecation, cyclic pain, infertility, and a high number of doctor/health care visits due to abdominal/pelvic pain. Recognising a broad range of potential symptoms is essential for raising awareness and supporting early detection efforts.