Web-based tailored information and question prompt for enhancing counselee participation and outcome; a RCT in breast cancer genetic counselling

In 2003 over 35% of counselees at Dutch clinical genetic centers were referred
because of cancer, 90% of which concerns breast cancer. At least 5% of all
breast cancer is considered hereditary. The goal of counselling is to
personalize technical and probabilistic genetic information to enable
well-informed decisions. Yet, our previous study in 130 initial cancer genetic
counselling visits showed that the information provided is relatively standard.
More tailored and psychosocially oriented information is not given routinely
unless counselees request it specifically. Our study also showed that many
counselees are dissatisfied with the way emotional matters are discussed and
that dissatisfaction leads to experiencing less personal control and more
anxiety. This may influence adherence to screening advices negatively. As many
counselees do not know what to expect from genetic counselling, they may be
unable to formulate specific questions and needs on medical, psychosocial and
emotional issues. To improve outcome, counselees should be specifically
prepared and encouraged to formulate and disclose questions and concerns.
For this purpose, a preparatory web-based intervention for increasing counselee
question asking and participation might be feasible, attractive and easy to
implement. The web-based information will include different levels of
up-to-date genetic and psychosocial information which can be viewed as needed,
and a question prompt sheet. Analysis of counselees' searching behaviour
(page-views, time online) will reveal what information is retrieved and
favoured most. To increase the impact of the intervention, counsellors are
instructed to review the prompted questions before the visit.

This study aims to establish the effectiveness of web-based counselee-tailored
information plus question prompt designed to 1) increase realistic expectations
of breast cancer genetic counselling, 2) facilitate participation, question
asking and information exchange, 3) improve outcome by decreasing cancer worry
and anxiety and increasing knowledge, correct risk perception, personal
control, optimism and correct illness peception and 4) improve adherence to
advices.

Using a randomised controlled trial, this study examines the effectiveness of
an innovative web-based intervention on counselling process and outcome. 200
counselees referred for breast cancer to the Department of Medical Genetics of
University Medical Center Uterecht and having internet acces at home will be
included. Counselees will be randomly assigned to receive only standard
information (currently distributed leaflet) or to additionally receive
web-based tailored information including question prompt and counsellor review
(E-info gene ca). All information is given at least 72 hours before the initial
visit.

At least three questionnaires will be sent to the counselee. One before the
initial visit, one after the initial visit and repeat visits, if any, and the
last 12 months after the last genetic counseling visit. These questionaires
measure breastcancer knowledge, risk perception, cancer worry and locus of
control. Additionally the first questionnaire asks for expectations of the
initial visit and the last two questionnaires measure information recall. The
second questionnaire (only for intervention group) also measures satisfaction
with the 'E-info gene ca'.

The visit will be videotaped and analysed on level of counselee participation.

The information on the website ('E-info gene ca') is tailored to counselees'
personal situation as guided by their answers on our previously developed
'QUOTE gene ca' scale. This produces different packages of pre-visit
information in content, extensiveness and complexity. This information and a
question prompt, a request to formulate five questions for the counsellor, may
generate a variety of questions to be dealt with in the subsequent visit.
E-info gene will be developed by a multi-disciplinary team of genetic
counsellors, psychologists, counselees and their relatives and using recent
brochures of the Dutch Cancer Society (KWF).

Previous research showed that participants do not experience being videotaped
as a burden, if they are well informed on the measures taken to protect their
privacy. The privacy of the participants will be assured on all prescribed
manners (saving data anonimously, no other use for the video's than research,
saving video's at a safe place). The video registration is done without a
researcher in the consulting room. The risk for participants in this research
is thus very small. The information received by the control group before the
initial consult is the currently used leaflet. For the intervention group the
information will be extended and aimed at optimalising the preparation of the
counselee on the visit.