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

Tong Zhu; Henrik Marschall; Karina E Hansen; Andrew W Horne; Lucky Saraswat; Krina T Zondervan; Stacey A Missmer; Lone Hummelshoj; Atilla Bokor; Camilla S Østrup; Anna Melgaard; Dorte Rytter

doi:10.1111/1471-0528.18066

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

Tong Zhu, Henrik Marschall, Karina E Hansen, Andrew W Horne, Lucky Saraswat, Krina T Zondervan, Stacey A Missmer, Lone Hummelshoj, Atilla Bokor, Camilla S Østrup, Anna Melgaard, Dorte Rytter

Research output: Contribution to journal/Conference contribution in journal/Contribution to newspaper › Journal article › Research › peer-review

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Abstract

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.

Original language	English
Journal	B J O G
Volume	132
Issue	5
Pages (from-to)	656-662
Number of pages	7
ISSN	1470-0328
DOIs	https://doi.org/10.1111/1471-0528.18066
Publication status	Published - Apr 2025

Keywords

Delphi study
early detection
endometriosis
infertility
menstrual pain
pelvic pain
symptom assessment

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10.1111/1471-0528.18066

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@article{54949370360d47cb959b379de02ac1c2,

title = "Consensus on Symptom Selection for Endometriosis Questionnaires: A Modified e-Delphi Study",

abstract = "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.",

keywords = "Delphi study, early detection, endometriosis, infertility, menstrual pain, pelvic pain, symptom assessment",

author = "Tong Zhu and Henrik Marschall and Hansen, {Karina E} and Horne, {Andrew W} and Lucky Saraswat and Zondervan, {Krina T} and Missmer, {Stacey A} and Lone Hummelshoj and Atilla Bokor and {\O}strup, {Camilla S} and Anna Melgaard and Dorte Rytter",

note = "{\textcopyright} 2025 The Author(s). BJOG: An International Journal of Obstetrics and Gynaecology published by John Wiley & Sons Ltd.",

year = "2025",

month = apr,

doi = "10.1111/1471-0528.18066",

language = "English",

volume = "132",

pages = "656--662",

journal = "B J O G",

issn = "1470-0328",

publisher = "John Wiley & Sons Inc.",

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TY - JOUR

T1 - Consensus on Symptom Selection for Endometriosis Questionnaires

T2 - A Modified e-Delphi Study

AU - Zhu, Tong

AU - Marschall, Henrik

AU - Hansen, Karina E

AU - Horne, Andrew W

AU - Saraswat, Lucky

AU - Zondervan, Krina T

AU - Missmer, Stacey A

AU - Hummelshoj, Lone

AU - Bokor, Atilla

AU - Østrup, Camilla S

AU - Melgaard, Anna

AU - Rytter, Dorte

PY - 2025/4

Y1 - 2025/4

N2 - 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.

AB - 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.

KW - Delphi study

KW - early detection

KW - endometriosis

KW - infertility

KW - menstrual pain

KW - pelvic pain

KW - symptom assessment

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U2 - 10.1111/1471-0528.18066

DO - 10.1111/1471-0528.18066

M3 - Journal article

C2 - 39803723

SN - 1470-0328

VL - 132

SP - 656

EP - 662

JO - B J O G

JF - B J O G

IS - 5

ER -

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

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