Development and testing of a tailored online fertility preservation decision aid for female cancer patients

Michelle van den Berg*, Elleke van der Meij, Annelies M. E. Bos, Marieke C. S. Boshuizen, Domino Determann, Ramon R. J. P. van Eekeren, Christianne A. R. Lok, Eva E. Schaake, Petronella O. Witteveen, Marielle J. Wondergem, Didi D. M. Braat, Catharina C. M. Beerendonk, Rosella P. M. G. Hermens

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

Background: Decision making regarding future fertility can be very difficult for female cancer patients. To support patients in decision making, fertility preservation decision aids (DAs) are being developed. However, to make a well-informed decision, patients need personalized information tailored to their cancer type and treatment. Tailored cancer-specific DAs are not available yet. Methods: Our DA was systematically developed by a multidisciplinary steering group (n = 21) in an iterative process of draft development, three rounds of alpha testing, and revisions. The drafts were based on current guidelines, literature, and patients' and professionals' needs. Results: In total, 24 cancer-specific DAs were developed. In alpha testing, cancer survivors and professionals considered the DA very helpful in decision making, and scored an 8.5 (scale 1–10). In particular, the cancer-specific information and the tool for recognizing personal values were of great value. Revisions were made to increase readability, personalization, usability, and be more careful in giving any false hope. Conclusions: A fertility preservation DA containing cancer-specific information is important in the daily care of female cancer patients and should be broadly available. Our final Dutch version is highly appraised, valid, and usable in decision making. After evaluating its effectiveness with newly diagnosed patients, the DA can be translated and adjusted according to (inter)national guidelines.
Original languageEnglish
Pages (from-to)1576-1588
Number of pages13
JournalCancer Medicine
Volume10
Issue number5
DOIs
Publication statusPublished - 1 Mar 2021

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