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

Abstract

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.

The counsellees' view of an unclassified variant in BRCA1/2: recall, interpretation, and impact on life

“…This underlines Coyne's suggestion to frame the impact of genetic counselling in the context of other stressors and reference groups [28]. However, this does not imply that the psychological impact of UV disclosure can be ignored.…”

“…The hypothesis that genetic uncertainty causes distress seems too general and unspecific [26,27] to find high distress levels due to uncertain DNA results and the genetic counselling in general [28,29]. Firstly, other variables should be included, such as demographics, family history and cancer history [21,30,31], coping style and personality [30,[32][33][34], illness perception [35,36], and family communication [37].…”

“…Secondly, the question could be raised whether current general distress measures are sensitive enough to measure the subtle impact of DNA results on the various life domains of the counsellees. Moreover, the contextual meaning of these measures is not always clear, due to the absence of comparison with other relevant stressors and reference groups [28]. Thirdly, the hypothesized relationship between uncertain DNA results and distress assumes that the counsellees correctly understand and interpret these DNA results as uncertain.…”

Psychological distress and use of psychosocial support in familial adenomatous polyposis

“…Measures for situational distress are thought to be more sensitive to the disease as source of stress [18]. In general, the prevalence of high distress levels among individuals with or at risk for hereditary forms of cancer has been found to be low (range 5 10-41%) [19][20][21][22][23][24][25][26][27][28][29].…”

Impact of hemochromatosis screening in patients with indeterminate results: The hemochromatosis and iron overload screening study

“…Scale scores were calculated using published algorithms 33 and change scores from baseline to follow-up were used as dependent variables. Attitude about genetic testing was assessed by level of agreement to the statement "Genetic testing to find out about disease risk is a good idea."…”