Development of E-info gene(ca): a website providing computer-tailored information and question prompt prior to breast cancer genetic counseling
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Akke Albada1, Sandra van Dulmen, Roel Otten
1NIVEL (Netherlands Institute for Health Services Research), 3500 BN, Utrecht, The Netherlands, a.albada@nivel.nl
Abstract:
This article describes the stepwise development of the website 'E-info gene(ca)'. 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 gene(ca) 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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