Aim: The aim of this longitudinal study was to explore both levels of and factors predictive of psychological and cancer-specific distress in women with demonstrated BRCA1 mutations belonging to families with hereditary breast/ovarian cancer (HBOC).
Methods: We included 214 women from HBOC families who had BRCA1 testing, and who were examined with a mailed questionnaire at pre-test (T1), 6 weeks after getting the test result (T2) and 18 months later (T3). Self-rating instruments for psychological distress, cancer-specific distress and personality traits were used.
Results: Hardly any significant changes were observed concerning the levels of psychological and cancer-specific distress from T1 via T2 to T3 for the total group or those with carrier or non-carrier status, while women with cancer had a significant reduction of cancer-specific distress over time. The pre-test levels of psychological and cancer-specific distress were significant and strong predictors of these types of distress at T3. The personality trait of neuroticism made a significant contribution to both types of distress at pre-test, and a small separate contribution to distress at T3. Carrier status, history of personal cancer, pre-test levels of optimism or multidimensional health locus of control did not significantly predict distress at T3.
Conclusions: Genetic testing or test results were not found to induce psychological or cancer-specific psychological distress at long-term. Neuroticism had a decisive influence at both pre-test and long-term levels of distress.