Michelle van den Berg1, Elleke van der Meij1, Annelies M E Bos2, Marieke C S Boshuizen3, Domino Determann3, Ramon R J P van Eekeren4, Christianne A R Lok5, Eva E Schaake6, Petronella O Witteveen7, Marielle J Wondergem8, Didi D M Braat1, Catharina C M Beerendonk1, Rosella P M G Hermens9. 1. Department of Obstetrics and Gynecology, Radboud University Medical Center, Nijmegen, The Netherlands. 2. Department of Obstetrics and Gynecology, University Medical Center Utrecht, Utrecht, The Netherlands. 3. PATIENT+, Utrecht, The Netherlands. 4. Department of Surgery, Rijnstate Hospital, Arnhem, The Netherlands. 5. Centre for Gynecological Oncology Amsterdam, The Netherlands Cancer Institute-Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands. 6. Department of Radiotherapy, The Netherlands Cancer Institute-Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands. 7. Department of Medical Oncology, University Medical Center Utrecht, Utrecht, The Netherlands. 8. Department of Hematology, VU University Medical Center Amsterdam, Amsterdam, The Netherlands. 9. Department of IQ Healthcare, Radboud University Medical Center, Nijmegen, The Netherlands.
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.
BACKGROUND: Decision making regarding future fertility can be very difficult for female cancerpatients. 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 cancerpatients 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.
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