Preparing individuals to communicate genetic test results to their relatives: report of a randomized control trial.

This study reports a randomized clinical trial evaluating the efficacy of an intervention to prepare individuals to communicate BRCA1/BRCA2 results to family members. Women aged 18 years and older, who had genetic testing, and who had adult first-degree relatives, were randomly assigned to a communication skills-building intervention or a wellness control session. Primary outcomes were the percentage of probands sharing test results, and the level of distress associated with sharing. The ability of the theory of planned behavior variables to predict the outcomes was explored. Four hundred twenty-two women were enrolled in the study, 219 (intervention) and 203 (control). Data from 137 in the intervention group and 112 in the control group were analyzed. Two hundred forty-nine probands shared test results with 838 relatives (80.1 %). There were no significant differences between study groups in the primary outcomes. Combining data from both arms revealed that perceived control and specific social influence were associated with sharing. Probands were more likely to share genetic test results with their children, female relatives and relatives who they perceived had a favorable opinion about learning the results. The communication skills intervention did not impact sharing of test results. The proband's perception of her relative's opinion of genetic testing and her sense of control in relaying this information influenced sharing. Communication of test results is selective, with male relatives and parents less likely to be informed. Prevalent psychosocial factors play a role in the communication of genetic test results within families.

A prospective study of quality of life among women undergoing risk-reducing salpingo-oophorectomy versus gynecologic screening for ovarian cancer.

OBJECTIVE: The primary objective of the study was to prospectively assess quality of life (QOL) among women at increased risk of ovarian cancer who are undergoing risk-reducing salpingo-oophorectomy (RRSO) or serial screening. METHODS: Women at increased risk of ovarian cancer who were undergoing RRSO were recruited into the study. At-risk women undergoing serial screening for early detection of ovarian cancer served as a comparison group. Participants completed measures of QOL, sexual functioning, body image, depressive symptoms, and a symptom checklist at baseline (prior to surgery for women obtaining RRSO), and then at 1-month, 6-months, and 12-months post baseline. RESULTS: Women who underwent surgery reported poorer physical functioning, more physical role limitations, greater pain, less vitality, poorer social functioning, and greater discomfort and less satisfaction with sexual activities at 1-month assessment compared to baseline. In contrast, women undergoing screening experienced no significant decrements in QOL or sexual functioning at 1-month assessment. Most QOL deficits observed in the surgical group were no longer apparent by 6-month assessment. Women in the surgery group were more likely to report hot flashes and vaginal dryness, but over time, symptoms of vaginal discomfort decreased to a greater extent in women who had RRSO compared to women undergoing screening. No differences in body image or depressive symptoms were observed between the two groups at any time point. CONCLUSIONS: Short-term deficits in physical functioning and other specific domains of QOL were observed following RRSO, but most women recovered baseline functioning by 6- and 12-month assessments. Issues regarding the potential impact of surgery on short-term sexual functioning should be considered and weighed carefully, particularly among younger women.

Intention to communicate BRCA1/BRCA2 genetic test results to the family.

Guided by the theory of planned behavior, this analysis explores the communication skills of women who had genetic testing for BRCA1 and BRCA2. The key outcome was intention to tell test results to adult first-degree relatives. The theory predicts that global and specific attitudes, global and specific perceived social norms, and perceived control will influence the communication of genetic test results. A logistic regression model revealed that global attitude (p < .05), specific social influence (p < .01), and perceived control (p < .05) were significant predictors of intention to tell. When gender and generation of relatives were added to the regression, participants were more likely to convey genetic test results to female than to male relatives (p < .05) and were also more likely to communicate test results to children (p < .01) or siblings (p < .05) than to parents. However, this association depended on knowing the relative's opinion of genetic testing. Intention to tell was lowest among participants who did not know their relative's opinion. These results extend the theory of planned behavior by showing that gender and generation influence intention when the relative's opinion is unknown.

Coping with ovarian cancer risk: the moderating effects of perceived control on coping and adjustment.

OBJECTIVE: Although perceived control and coping have been studied across various health conditions, these relationships have been less well studied in the context of coping with cancer risk over time. The present study was a longitudinal study of the effects of perceived control and problem-focused coping on changes in psychological adjustment and behavioural outcomes among women at increased risk for ovarian cancer. DESIGN AND METHODS: Eighty women enrolled in a familial cancer risk assessment programme participated in this study. Assessments of problem-focused coping, perceived control and distress were collected upon entry into the programme and again at 3-month follow-up. Behavioural adherence to screening during the 12-month period following programme entry was obtained from clinic records. RESULTS: Using hierarchical regression analysis, we observed a significant interaction between perceived control and problem-focused coping for psychological distress, beta=0.94, p<.05. Specifically, problem-focused coping was associated with increasing distress over time among women who perceived high control. A significant control by coping interaction was also observed for behavioural adherence to pelvic ultrasound and CA125 screening, such that women who perceived high control and utilized problem-focused coping were less likely to undergo screening. CONCLUSIONS: Under conditions of high perceived control, problem-focused coping was associated with increasing distress as well as poorer behavioural adherence. Thus, perceived control and problem-focused coping may not always yield positive psychological or behavioural health outcomes. These findings contribute to a greater understanding of how problem-focused coping and perceived control may influence the course of adjustment to cancer risk over time.

Psychosocial correlates of intention to undergo prophylactic oophorectomy among women with a family history of ovarian cancer.

BACKGROUND: The purpose of this study was to examine sociodemographic and psychosocial correlates of intention to undergo prophylactic oophorectomy among women with a family history of ovarian cancer. METHODS: Participants were 76 women enrolled in a familial cancer risk assessment program. Psychosocial assessments were collected upon entry into the program and included measures of perceived risk of developing ovarian cancer, perceived benefits and limitations of prophylactic oophorectomy, and psychological distress. In addition, respondents were asked whether they intended to undergo prophylactic oophorectomy in the following 12 months. RESULTS: Thirty-four percent reported intention to have surgery within 12 months. Logistic regression analyses indicated that intention to undergo surgery was associated with several psychosocial factors including greater perceived risk of developing ovarian cancer and greater perceived benefits of surgery. CONCLUSIONS: Women who have heightened risk perceptions and who perceive there to be many benefits of surgery may be more inclined to undergo the procedure, possibly without fully considering the potential limitations and consequences of surgery. These findings suggest the need for education and risk counseling designed to facilitate informed decision making among not only high-risk women, but also women who perceive themselves to be at increased risk.

Communication of BRCA1 and BRCA2 results to at-risk relatives: a cancer risk assessment program's experience.

We describe results from a survey designed to assess patterns of communication within families shortly after an individual receives results of BRCA1 and BRCA2 mutation carrier status. Shortly after disclosure of BRCA1 and BRCA2 genetic test results, the proband was contacted by phone to administer the post disclosure survey. Questions asked included whether they had shared their results with their siblings or adult children, if there were difficulties in communicating the test results, and if there was any distress associated with the sharing of results. A total of 162 women who have received results from BRCA1 and BRCA2 genetic testing participated in the survey. The probands shared their results more often with their female than their male relatives (P < 0.001). Probands who had tested positive for a mutation in the BRCA1 or BRCA2 gene shared their results more often with their relatives than did probands who were not carriers (P = 0.002). Probands reported more often that their siblings rather than their adult children had difficulties understanding the results (P = 0.001). The probands who were carriers more often reported having difficulties explaining their results to their relatives (P < 0.001) and their relatives were upset on hearing the result more often than were the relatives of probands who were not carriers (P < 0.001). The probands who were carriers reported more often that they were upset explaining their results to their relatives than did the probands who were not carriers (P < 0.001). Individuals are disclosing their test results to their relatives. Probands who are BRCA1- or BRCA2-positive are more likely to experience difficulty and distress with the communication of their test results to family members.