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

Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › fagfællebedømt

Dokumenter

  • Fulltext

    Forlagets udgivne version, 18,5 MB, PDF-dokument

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

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.

OriginalsprogEngelsk
Artikelnummer1102006
TidsskriftFrontiers in Global Women's Health
Vol/bind4
Antal sider10
DOI
StatusUdgivet - 2023

Bibliografisk note

Funding Information:
HSN reports grants or contracts from; Freya Biosciences ApS, Ferring Pharmaceuticals, BioInnovation Institute, Ministry of Education, Novo Nordic Foundation, Augustinus Fonden, Oda og Hans Svenningsens Fond, Demant Fonden, Ole Kirks Fond, and Independent Research Fund Denmark, and payment or honoraria from; Ferring Pharmaceuticals, Merck A/S, Astra Zeneca, Cook Medical, Ibsa Nordic. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Funding Information:
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.

Funding Information:
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. Acknowledgments

Publisher Copyright:
2023 Thomsen, Vexø, Schnack, Hansen, Forman, Hartwell, Nielsen, Hummelshoj, Nyegaard and Madsen.

ID: 363280405