Danish translation, cross-cultural adaptation, and electronic migration of the World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonisation Project Endometriosis Patient Questionnaire

Line Holdgaard Thomsen; Laura Emilie Vexø; Tine Henrichsen Schnack; Karina Ejgaard Hansen; Axel Forman; Dorthe Hartwell; Henriette Svarre Nielsen; Lone Hummelshoj; Mette Nyegaard; Mette Elkjær Madsen

doi:10.3389/fgwh.2023.1102006

Danish translation, cross-cultural adaptation, and electronic migration of the World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonisation Project Endometriosis Patient Questionnaire

Front Glob Womens Health. 2023 Mar 13:4:1102006. doi: 10.3389/fgwh.2023.1102006. eCollection 2023.

Authors

Line Holdgaard Thomsen^{1

2}, Laura Emilie Vexø^{3

4}, Tine Henrichsen Schnack¹, Karina Ejgaard Hansen⁵, Axel Forman⁶, Dorthe Hartwell³, Henriette Svarre Nielsen^{4

7}, Lone Hummelshoj^{8

9}, Mette Nyegaard¹⁰, Mette Elkjær Madsen^{3

4

7}

Affiliations

¹ Department of Gynecology and Obstetrics, Odense University Hospital, Odense, Denmark.
² Department of Clinical Research, University of Southern Denmark, Odense, Denmark.
³ Department of Gynecology, Rigshospitalet, Copenhagen University Hospital, Copenhagen, Denmark.
⁴ Department of Obstetrics and Gynecology, Copenhagen University Hospital, Hvidovre, Denmark.
⁵ Department of Public Health, Aarhus University, Aarhus, Denmark.
⁶ Department of Gynecology and Obstetrics, Aarhus University Hospital, Aarhus, Denmark.
⁷ Department of Clinical Medicine, University of Copenhagen, Copenhagen, Denmark.
⁸ World Endometriosis Research Foundation (WERF), London, United Kingdom.
⁹ Endometriosis.org, London, United Kingdom.
¹⁰ Department of Health Science and Technology, Aalborg University, Aalborg, Denmark.

Abstract

Objectives: This study aims to translate and cross-culturally adapt the standard version of the World Endometriosis Research Foundation (WERF) EPHect Endometriosis Patient Questionnaire (EPQ) into Danish and to ensure equivalence of a Danish electronic version.

Methods: The translation, cultural adaption, and electronic migration followed recommendations from the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) and the Critical Path Institute. Ten women with endometriosis were enrolled for cognitive debriefing of the paper version (pEPQ) after translation and back translation. The questionnaire was then migrated into an electronic version (eEPQ) and subsequently tested for usability and measurement equivalence by five women with endometriosis.

Results: Cross-cultural alterations were needed for medical terms, response options for ethnicity, the educational system, and measurement units. Thirteen questions were altered after back translation, while 21 underwent minor changes after cognitive debriefing. After testing the eEPQ, 13 questions were altered. Questions tested for measurement equivalence across the two modes of administration were found comparable. The median time-to-complete the pEPQ and eEPQ was 62 min (range: 29-110) and 63 min (range: 31-88), respectively. General comments included the questionnaire being relevant but long and repetitive.

Conclusions: We find the the Danish pEPQ and eEPQ similar and comparable to the original English instrument. However, attention must be drawn to questions regarding measurement units, ethnicity, and educational systems before cross-country comparison. The Danish pEPQ and eEPQ are suitable for obtaining subjective data on women with endometriosis.

Keywords: Danish; EPHect EPQ; cross-cultural adaptation; eletronic migration; endometriosis; questionnaire; translation; validation.

Grants and funding

The project has received funding from the European Union's Horizon 2020 research and innovation programme under grant agreement No 101017562. The Danish Endometriosis Society also supported this study. MN is supported by the Novo Nordisk Foundation NNF21OC0071050. LEV and MEM report funding from Ferring Pharmaceuticals during the conduct of this study (#MiHSN01). The funders had no role in study design or conduct, data collection, data analysis, data interpretation, manuscript development and writing, nor any decisions regarding the submission of this paper.