Abstract
Women who want to know whether their breast cancer or the breast cancer in their family is hereditary can request a referral for genetic counselling. Those who are the first in their family to request breast cancer genetic counselling often don’t know what to expect or have unrealistic expectations. Their
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initial breast cancer genetic counselling visits are mainly educational in nature, with large amounts of relatively standard information and little counselee participation. These visits might not optimally fulfil counselees’ information needs. Therefore, a pre-visit website, called E-info geneca, was developed with the aim to help counselees to prepare for their first visit and to pursue a more active role in the visit. We conducted a study of the effects of this pre-visit website E-info geneca on counselees’ expectations, communication in the visit and post-visit outcomes. 197 Counselees were randomized to receive usual care (UC) or UC plus the pre-visit website. The website provided counselees with computer-tailored information and a question prompt sheet (QPS) on which counselees could write their questions for the visit. These questions were sent to the counsellor pre-visit. All counselees completed a pre- and post-visit questionnaire and visits were videotaped. We studied effects on the communication in the visit, counselees’ information recall, knowledge about breast cancer and heredity, fulfilment of needs, risk perception accuracy, anxiety and perceived personal control, using multilevel regression analyses. After having accessed E-info geneca counselees better knew what to expect of their first visit and less often had unrealistic expectations about possibilities for DNA-testing than counselees in the UC group. In the visit, counselees in the intervention group more often shared their agenda, directed the flow of the visit and paraphrased the counsellors’ words. Counsellors consistently introduced and answered the QPS questions. As a result, counsellors provided more information about preventive options, risk of family members and inheritance if this was requested and the information provided was more specific to the individual counselee. Post-visit, counselees in the intervention group remembered more of the information provided in the visit. They also had more knowledge of breast cancer and heredity and reported better fulfilment of information needs than counselees in the UC group. The effects of the intervention were strongest for those counselees who did not receive an indication for DNA-testing, their recall scores showed more increase and their anxiety levels dropped more in the intervention compared to UC group. No intervention effects were found after the first visit on accuracy of risk perception or perceived personal control. This study shows that pre-counselling education, using tailored information technology, facilitates counselees to better prepare themselves for their first visit for breast cancer genetic counselling. This leads to more effective first visits, in particular for counselees who received no indication for DNA-testing and therefore had no indication for a second visit. Future study should focus on the effects of the website on the outcomes after a complete series of visits
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