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

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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.

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Most cited references 27

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Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.

Paul A Harris, Robert Taylor, Robert Thielke … (2009)

Research electronic data capture (REDCap) is a novel workflow methodology and software solution designed for rapid development and deployment of electronic data capture tools to support clinical and translational research. We present: (1) a brief description of the REDCap metadata-driven software toolset; (2) detail concerning the capture and use of study-related metadata from scientific research teams; (3) measures of impact for REDCap; (4) details concerning a consortium network of domestic and international institutions collaborating on the project; and (5) strengths and limitations of the REDCap system. REDCap is currently supporting 286 translational research projects in a growing collaborative network including 27 active partner institutions.

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The REDCap consortium: Building an international community of software platform partners

Paul Harris, Robert Taylor, Brenda Minor … (2019)

The Research Electronic Data Capture (REDCap) data management platform was developed in 2004 to address an institutional need at Vanderbilt University, then shared with a limited number of adopting sites beginning in 2006. Given bi-directional benefit in early sharing experiments, we created a broader consortium sharing and support model for any academic, non-profit, or government partner wishing to adopt the software. Our sharing framework and consortium-based support model have evolved over time along with the size of the consortium (currently more than 3200 REDCap partners across 128 countries). While the "REDCap Consortium" model represents only one example of how to build and disseminate a software platform, lessons learned from our approach may assist other research institutions seeking to build and disseminate innovative technologies.

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Guidelines for the Process of Cross-Cultural Adaptation of Self-Report Measures

Dorcas E. Beaton, Claire Bombardier, Marcos Ferraz … (2001)

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Author and article information

Contributors

Line Holdgaard Thomsen: URI : https://loop.frontiersin.org/people/2094796/overview

Laura Emilie Vexø: URI : https://loop.frontiersin.org/people/2105318/overview

Tine Henrichsen Schnack: URI : https://loop.frontiersin.org/people/2216839/overview

Karina Ejgaard Hansen: URI : https://loop.frontiersin.org/people/2216392/overview

Dorthe Hartwell: URI : https://loop.frontiersin.org/people/2218564/overview

Henriette Svarre Nielsen: URI : https://loop.frontiersin.org/people/823520/overview

Lone Hummelshoj: URI : https://loop.frontiersin.org/people/2175298/overview

Mette Nyegaard: URI : https://loop.frontiersin.org/people/490243/overview

Mette Elkjær Madsen: URI : https://loop.frontiersin.org/people/2171919/overview

Journal

Journal ID (nlm-ta): Front Glob Womens Health

Journal ID (iso-abbrev): Front Glob Womens Health

Journal ID (publisher-id): Front. Glob. Womens Health

Title: Frontiers in Global Women's Health

Publisher: Frontiers Media S.A.

ISSN (Electronic): 2673-5059

Publication date (Electronic): 13 March 2023

Publication date Collection: 2023

Volume: 4

Electronic Location Identifier: 1102006

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

Author notes

Edited by: Adriana Invitti, Federal University of São Paulo, Brazil

Reviewed by: Idhaliz Flores, Ponce Health Sciences University, Puerto Rico Annalise Weckesser, Birmingham City University, United Kingdom

[* ] Correspondence: Line Holdgaard Thomsen Line.Holdgaard.Thomsen@ 123456rsyd.dk

[ † ]

These authors share first authorship

[ ‡ ]

These authors share last authorship

Specialty Section: This article was submitted to Quality of Life, a section of the journal Frontiers in Global Women's Health

Article

DOI: 10.3389/fgwh.2023.1102006

PMC ID: 10042231

SO-VID: d5b059e9-64bb-4f2c-a643-f1c5a50fb0ee

License:

This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

History

Date received : 18 November 2022

Date accepted : 01 February 2023

Page count

Figures: 5, Tables: 1, Equations: 0, References: 30, Pages: 0, Words: 0

Funding

Funded by: European Union's Horizon

Award ID: 101017562

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.

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

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Most cited references 27

Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.

The REDCap consortium: Building an international community of software platform partners

Guidelines for the Process of Cross-Cultural Adaptation of Self-Report Measures

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