ObjectiveTo 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.DesignA 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.SettingParticipants represented 7 countries, including Australia, Denmark,
France, Hungary, the United Kingdom, the United States, and Turkey.PopulationIndividuals
with endometriosis, medical doctors and researchers with expertise in endometriosis.MethodsA
modified e-Delphi study.Main Outcome MeasuresConsensus-based selection of symptoms
for endometriosis questionnaires.ResultsSeventy-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).ConclusionThis
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.
