Longterm psychological riskprofiles in women at risk for hereditary breast cancer adhering to surveillance or opting for prophylactic mastectomy

The current study is a follow-up study on two earlier projects about the
psychological consequences of regular surveillance on the one hand and
prophylactic surgery on the other in women at increased risk of developing
breast cancer due to an identified hereditary predisposition or family history.
In general both groups of women psychologically seem to function well. However,
in both earlier projects several subgroups of women who were more vulnerable
for heightened psychological distress were found. It is warranted to identify
these women as early as possible. To examine this both groups of women will be
asked to participate in this follow-up study in order to identify short- and
long-term risk profiles for women who experience heightened psychological
distress

To identify the determinants of psychological vulnerability through time (for
the development of the prognostic risk profiles)

Both groups of women (EMC-DDHK 98-22B, MRISC studie; EMC-DDHK 98-15B, PREVOM
studie) will be asked to participate in this follow-up study. The surveillance
group will fill in questionnaires around two consecutive surveillance
appointments in the clinic. The prophylactic surgery group will fill in
questionnaires around their annual surveillance appointment. A randomly
selected subgroup of women will receive an interview on the baseline
measurement moment.

The burden put on the participants will be minimal. A questionnaire is to be
filled in five times. The first questionnaire will take 45 minutes maximum to
fill in, the other questionnaires 15 minutes. All participants will be familiar
with this procedure and the nature of most of the questions. The interview
which will be conducted in a randomly selected subgroup will take 60 minutes
maximum and will be held at the participants home. There are no risks
associated with participation in this study.