Abstract
This article describes the stepwise development of the website ‘E-info geneca’. The website provides counselees in breast cancer genetic counseling with computer-tailored information and a question prompt prior to their first consultation. Counselees generally do not know what to expect from genetic counseling and they tend to have a passive role, receiving large amounts of relatively standard information. Using the “intervention mapping approach,” we developed E-info geneca aiming to enhance counselees’ realistic expectations and participation during genetic counseling. The information on this website is tailored to counselees’ individual situation (e.g., the counselee’s age and cancer history). The website covers the topics of the genetic counseling process, breast cancer risk, meaning of being a carrier of a cancer gene mutation, emotional consequences and hereditary breast cancer. Finally, a question prompt encourages counselees to prepare questions for their genetic counseling visit.
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Acknowledgment
We want to thank the programmers, Paul van der Heijden and Marcus Winckers, who developed the website. Also, we thank the members of the expert panel: Ms. C.J.M. van der Sijs-Bos (clinical geneticist), Ms. A.E. Schoemaker (genetic counselor), Ms. L. van Rossum (counselee-expert Dutch Breast Cancer Association), Ms. L. Vermaas (webmaster and counselee-expert Dutch Breast Cancer Association), Ms. E.M. Maas (counselee-expert). Finally, we would like to thank the respondents who participated in the test phase. This study was funded by a grant from the Dutch Cancer Society (Nivel 2006-3469).
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Albada, A., van Dulmen, S., Otten, R. et al. Development of E-Info Geneca: A Website Providing Computer-Tailored Information and Question Prompt Prior to Breast Cancer Genetic Counseling. J Genet Counsel 18, 326–338 (2009). https://doi.org/10.1007/s10897-009-9221-4
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DOI: https://doi.org/10.1007/s10897-009-9221-4