Psychological and cancer-specific distress at 18 months post-testing in women with demonstrated BRCA1 mutations for hereditary breast/ovarian cancer

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.