Psychosocial factors predictingBRCA1/BRCA2 testing decisions in members of hereditary breast and ovarian cancer families

Abstract

Although BRCA1/2 testing has increasingly entered clinical practice, much is to be learned about the most effective ways to provide counseling to persons potentially interested in receiving test results. The purpose of this study was to identify factors affecting genetic testing decisions in a cohort of hereditary breast and ovarian cancer (HBOC) families presented with the choice to undergo testing. Relatives in these families are known to carry BRCA1 or BRCA2 mutations. Sociodemographics, personality traits, and family functioning were self-assessed using validated psychometric instruments at baseline. Among 172 individuals who participated in pretest education and counseling, 135 (78%) chose to undergo genetic testing and 37 (22%) chose not to be tested. Individuals who chose to undergo genetic testing were more likely to be older (> or =40 years), to have lower levels of optimism, and to report higher levels of cohesiveness in their families. A better understanding of factors that influence interest in predictive testing may help to inform the counseling that occurs prior to genetic testing.

Acceptance of genetic testing for hereditary breast ovarian cancer among study enrollees from an African American kindred

“…Of the participants in our study who completed a baseline survey and participated in genetic education and counseling, 88% accepted genetic testing. This uptake rate is consistent with prior studies [Biesecker et al, 2000;Botkin et al, 2003]. …”

Familial testicular cancer: Interest in genetic testing among high-risk family members

“…Other studies of interest in genetic testing obtained interest ranging from 20% to 95% among women at risk of breast cancer while actual test uptake and returning for disclosure were considerably less. 17,23,30,[87][88][89][90][91][92] A recent systematic review of uptake rates for breast cancer genetic testing found a mean hypothetical uptake of 66% and mean actual uptake of 59%. 93 Stated interest has also been high with lower actual uptake for colon cancer, Huntington's disease, Alzheimer's disease and alcoholism.…”

“…Previous studies emphasize the important role of the family in genetic testing decisions. 30,60 We used the standardized Duke Social Support and Stress Scale (DUSOCS) 61 to measure levels of family and non-family stress and social support. It is brief, practical in a clinical setting, and focuses primarily on the quality rather than the quantity of support in 4 domains: family support, non-family support, family stress and non-family stress.…”

“…We based the items on those most commonly cited in the literature and our clinical research experience as factors that may positively or negatively impact interest in genetic testing. 28,29,30 We also developed several study-specific scales, such as those to measure testicular cancer knowledge and genetics knowledge. Demographics, testicular cancer and genetic knowledge, health beliefs, and psychological and social factors were evaluated as independent variables related to interest in genetic testing.…”

Barriers to participating in genetic counseling and BRCA testing during primary treatment for breast cancer

“…12,14 At-risk family members with a more optimistic disposition were less likely to opt for testing than those who were less optimistic. 9 Comparing tested and nontested at-risk women revealed that the nontested group had a higher education level, were more often childless, showed more reluctance toward prophylactic surgery, were younger when first confronted with a relative affected by breast or ovarian cancer, …”