Website providing tailored information prepares counselees for breast cancer genetic counselling

A website with tailored information enhances counselees’ realistic expectations of their first visit for breast cancer genetic counselling. Women also display more assertiveness when speaking with the clinical geneticist or genetic counsellor, and they remember more information. These results are described in the PhD thesis of Akke Albada.

Women who wish to know whether their breast cancer or the breast cancer in their family is hereditary can request a referral for genetic counselling. These counselees generally do not know what to expect of genetic counselling or expect to have a DNA-test irrespective of their risk profile. Therefore, an educational website, called E-info gene^ca, was developed by NIVEL and the Department of Medical Genetics of the University Medical Center Utrecht, with the aim to help counselees to prepare for their first visit. The information on this website is computer-tailored to counselees' medical history and that of their families. Furthermore, a question prompt invites them to prepare questions for the geneticist or counsellor. The study included analyses of questionnaires completed by the counselees and counsellors, video recordings of the first visits and the user statistics of the educational website.

Realistic expectations
The first visit for genetic counselling is mainly educative, the counsellor provides information about hereditary breast cancer, discusses whether there are indicators of hereditary breast cancer and whether there is an indication for DNA-testing. A large amount of information needs to be processed. Women were found to contribute little to the conversation and they only recalled half of the information discussed. After having accessed E-info gene^ca counselees had more realistic expectations of genetic counselling and DNA-testing. During the visit, counselees communicated more assertively by more often sharing their agenda, directing the flow of the visit and checking whether they understood the geneticist or counsellor. Counsellors consistently introduced and answered the counselees’ questions. Afterwards, counselees in the intervention group remembered more of the information provided during the visit. They also possessed more knowledge of breast cancer and heredity and considered their need for information better fulfilled.

Worry and risk
“The website E-info gene^ca helps counselees to prepare for breast cancer genetic counselling”, says Akke Albada. “And the visit becomes more effective, especially for those counselees who did not receive an indication for DNA-testing.” She pointed out that counselees were prepared for the possibility of not receiving an indication for DNA-testing and this resulted in fewer disagreements in intervention group consultations. Also, their recall scores showed more increase and their anxiety levels dropped. These effects were moderate, but important as counselees need to have their questions answered to better understand and interpret their risk levels.

The aim is to implement the website in daily practice for counselees in cancer genetic counselling.

This study was financed by the Dutch Cancer Society.