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Abstract
Objectives: To improve information provision about fertility preservation for breast cancer patients in the Netherlands, a web-based Decision Aid (DA) with additional values clarification exercise was developed according to the International Patient Decision Aid Standards criteria. This study reports on development of the DA.
Methods: Development consisted of four stages: (I) development of a draft DA, (II) acceptability of the draft DA to patients, (III) understanding (knowledge) in healthy populations, (IV) acceptability of the revised DA among patients and physicians. The study population consisted of 185 participants: 20 patients, 17 physicians and 148 healthy volunteers.
Results: The draft DA was considered to be relevant and understandable by patients, physicians and healthy volunteers. The values clarification exercise needed adaptation in explanation and navigation, which was done after stage II. Knowledge scores improved by 18% for lower educated women (from 4.1 (41%) to 5.9 (59%) correct answers), and by 34% for higher educated women after viewing the website (from 3.9 (39%) to 7.3 (73%) correct answers). Design of the DA was evaluated to be clear, but not always very appealing.
Conclusions: The DA was regarded as a relevant source of information that seemed coherent and understandable.
Acknowledgements
We would like to thank all participating patients and clinicians for their contribution in all stages of development of this Decision Aid. Also we would like to thank Monique Baas-Thijssen, and the multidisciplinary FP team for providing us with feedback on the content of the decision aid.
Current knowledge on this subject
Information provision about fertility preservation (FP) is often not sufficient.
Decision making about FP is difficult; a decision aid (DA) might be effective in decision making about FP.
Worldwide, some patient educational materials (including DAs) have been developed [16], but no Dutch educational materials have been available.
What this study adds
This study shows detailed insight in the process of development of a patient decision aid about FP.
The DA www.borstkankerenkinderwens.nl was seen by clinicians and patients to be a relevant and necessary information source for younger women with breast cancer who are facing a decision about FP.