What do ratings of cancer-specific distress mean among women at high risk of breast and ovarian cancer?



Women recruited from a hereditary cancer registry provided ratings of distress associated with different aspects of high-risk status and genetic testing and completed measures of general psychological distress, emotional and social health, and role functioning. Overall, high-risk status was rated as more distressing than undergoing genetic testing. Women without a personal history of cancer rated the level of distress associated with a positive test result to be greater than that associated with high-risk status. In contrast, level of distress associated with a positive test result was not significantly different from that associated with high-risk status for women with a personal history of cancer. Furthermore, women with a personal cancer history also anticipated that if they had an altered gene associated with increased risk of cancer, it would be less distressing than their diagnosis of cancer had been. Women with the highest ratings of cancer-related stress were less inclined to obtain testing, but were not more generally distressed or maladjusted. The need to interpret psychological distress and the stressfulness of genetic testing among high-risk women with respect to relevant comparison data is discussed. © 2002 Wiley-Liss, Inc.