Suzanne C. O'Neill

The interaction of post-traumatic growth and post- traumatic stress symptoms in predicting depressive symptoms and quality of life

Objective: We sought to explore whether post‐traumatic growth (PTG) (positive change or benefit finding resulting from trauma) moderates relationships between post‐traumatic stress symptoms (PTSS) and both depression and quality of life (QOL) among breast cancer survivors.

Randomized Trial of a Decision Aid for BRCA1/BRCA2 Mutation Carriers: Impact on Measures of Decision Making and Satisfaction

OBJECTIVE Genetic testing is increasingly part of routine clinical care for women with a family history of breast cancer. Given their substantially elevated risk for breast cancer, BRCA1/BRCA2 mutation carriers must make the difficult decision whether or not to opt for risk reducing mastectomy. To help BRCA1/2 carriers make this decision, the authors developed a computer-based interactive decision aid that was tested against usual care in a randomized controlled trial. DESIGN After the completion of genetic counseling, 214 female (aged 21-75) BRCA1/BRCA2 mutation carriers were randomized to Usual Care (UC; N = 114) or Usual Care plus Decision Aid (DA; N = 100) arms. UC participants received no additional intervention. DA participants were sent the CD-ROM DA to view at home. MAIN OUTCOME MEASURES The authors measured final management decision, decisional conflict, decisional satisfaction, and receipt of risk reducing mastectomy at 1-, 6-, and 12-months postrandomization. RESULTS Longitudinal analyses revealed that the DA was effective among carriers who were initially undecided about how to manage their breast cancer risk. Within this group, the DA led to an increased likelihood of reaching a management decision (OR = 3.09, 95% CI = 1.62, 5.90; p < .001), decreased decisional conflict (B = -.46, z = -3.1, p <002), and increased satisfaction (B = .27, z = 3.1, p = .002) compared to UC. Among carriers who had already made a management decision by the time of randomization, the DA had no benefit relative to UC. CONCLUSION These results demonstrate that BRCA1/BRCA2 mutation carriers who are having difficulty making a breast cancer risk management decision can benefit from adjunct decision support.

Retention and use of breast cancer recurrence risk information from genomic tests : The role of health literacy

Background: New genomic technology now allows physicians to provide women with individualized and highly accurate breast cancer recurrence risk estimates that are a key factor in adjuvant (after surgery) therapy decisions. Because these genomic tests are so new, little is known about how well patients understand the tests and their results. Method: We interviewed 163 stage I or II breast cancer patients at a routine follow-up appointment. We assessed their health literacy (using the Rapid Estimate of Adult Learning in Medicine) as well as their knowledge of and attitudes towards a genomic test that identifies risk of recurrence in hormone receptor–positive, node–negative breast cancer (the OncoType Dx Recurrence Score). Results: Women with lower health literacy recalled less of the information provided about the recurrence risk test than women with higher health literacy. Health literacy was not related to the amount of additional information women desired. Women with higher health literacy preferred to have a more active role in decisions about the test. Implications: Health literacy may affect womens capacity to learn about the new genomic tests as well as their desire for informed participation in their medical care. (Cancer Epidemiol Biomarkers Prev 2007;16(2):249–55)

What can interest tell us about uptake of genetic testing? Intention and behavior amongst smokers related to patients with lung cancer.

Background: Much of the research examining psychosocial aspects of genetic testing has used hypothetical scenarios, based on the largely untested assumption that hypothetical genetic testing intentions are good proxies for behavior. We tested whether hypothetical interest predicts uptake of genetic testing and whether factors that predict interest also predict uptake. Methods: Participants (n = 116) were smokers and related to patients with lung cancer, who completed a telephone survey. Interest in genetic testing for lung cancer risk was indicated by responding ‘definitely would’ to a Likert-style question. Internet-delivered genetic testing for lung cancer risk was then offered. Uptake was indicated by requesting the test and receiving the result. Results: 63% of participants said they ‘definitely would’ take the genetic test; uptake was 38%. Participants who said they ‘definitely would’ take the test were more likely than others to take the offered test (45% vs. 26%, p = 0.035). Interest was associated with attitudes towards genetic testing and motivation to quit smoking. Uptake was associated with motivation, prior awareness of genetic testing, and daily Internet use. Conclusion: Hypothetical interest only modestly predicts uptake of genetic testing. Interest in genetic testing likely reflects generally positive attitudes that are not good predictors of the choices individuals subsequently make.

Distress among women receiving uninformative BRCA1/2 results: 12‐month outcomes

Objective: Few data are available regarding the long‐term psychological impact of uninformative BRCA1/2 test results. This study examines change in distress from pretesting to 12‐months post‐disclosure, with medical, family history, and psychological variables, such as pretesting perceived risk of carrying a deleterious mutation prior to testing and primary and secondary appraisals, as predictors.

Tolerance for uncertainty and perceived risk among women receiving uninformative BRCA1/2 test results†

Women who receive uninformative BRCA1/2 genetic test results face ongoing uncertainty about their future cancer risks. This article prospectively examined the influence of intolerance for uncertainty and perceived breast cancer risk on psychological distress following the receipt of uninformative BRCA1/2 test results. Sixty‐four women who received uninformative BRCA1/2 mutation test results completed measures of Intolerance for Uncertainty, perceived breast cancer risk, and measures of cancer‐related, genetic testing, and general distress. Cancer‐related (ΔR2 = 0.18, P ≤ 0.001), general (ΔR2 = 0.04, P ≤ 0.05), and genetic testing distress (ΔR2 = 0.12, P ≤ 0.01) were associated with intolerance for uncertainty at 1 month post‐disclosure. The interaction of intolerance for uncertainty and breast cancer perceived risk predicted cancer‐related (ΔR2 = 0.10, P ≤ 0.001) and genetic testing distress (ΔR2 = 0.09, P ≤ 0.01) at 6 months post‐disclosure. Distress was highest among patients with highest perceived risk and intolerance for uncertainty, suggesting that those who have difficulty coping with their ambiguous risk are at risk for long‐term distress. The clinical and research implications of these results are discussed.

Preferences for Genetic and Behavioral Health Information: The Impact of Risk Factors and Disease Attributions

Increased availability of genetic risk information may lead the public to give precedence to genetic causation over behavioral/environmental factors, decreasing motivation for behavior change. Few population-based data inform these concerns. We assess the association of family history, behavioral risks, and causal attributions for diseases and the perceived value of pursuing information emphasizing health habits or genes. 1,959 healthy adults completed a survey that assessed behavioral risk factors, family history, causal attributions of eight diseases, and health information preferences. Participants’ causal beliefs favored health behaviors over genetics. Interest in behavioral information was higher than in genetic information. As behavioral risk factors increased, inclination toward genetic explanations increased; interest in how health habits affect disease risk decreased. Those at greatest need for behavior change may hold attributions that diminish interest in information for behavior change. Enhancing understanding of gene-environment influences could be explored to increase engagement with health information.

Intentions to Maintain Adherence to Mammography

OBJECTIVE Recent attention has focused on moving women from having initial mammograms to maintaining adherence to regular mammography schedules. We examined behavioral intentions to maintain mammography adherence, which include the likelihood of performing a behavior, and implementation intentions, specific action plans to obtain mammograms. Potential predictors were Theory of Planned Behavior constructs, previous barriers, previous mammography maintenance, and age. METHODS Respondents were 2062 currently adherent women due for their next mammograms in 3-4 months according to American Cancer Society recommendations for annual screening. Statistical models were used to examine predictors of behavioral and two implementation intentions, including having thought about where women would get their next mammograms and having thought about making appointments. RESULTS With the exception of pros, cons, and subjective norms, all variables predicted behavioral intentions (p <or= 0.05). Stronger perceived control, previous mammography maintenance, and one barrier (vs. none) predicted being more likely to have thought about where to get their next mammograms. Previous maintenance and no barriers (vs. two) predicted being more likely to have thought about making appointments. CONCLUSIONS Our findings suggest that among women currently adherent to mammography, volitional factors, such as barriers, may be better predictors of implementation intentions than motivational factors, such as attitudes. Implementation variables may be useful in understanding how women move from intentions to action. Future research should examine how such factors relate to mammography maintenance behaviors and can be integrated into behavior change interventions.

The feasibility of online genetic testing for lung cancer susceptibility: uptake of a web-based protocol and decision outcomes.

Purpose: To examine the feasibility of offering genetic susceptibility testing for lung cancer (GSTM1) via the Internet to smokers who were blood relatives of patients with lung cancer. Outcomes include proportion who logged on to the study website to consider testing, made informed decisions to log on and to be tested.Methods: Baseline measures were assessed via telephone survey. Participants could choose to log on to the study website; those who did were offered testing. Informed decisions to log on and to be tested were indicated by concordance between the decision outcome and test-related attitudes and knowledge.Results: Three hundred four relatives completed baseline interviews. One hundred sixteen eligible relatives expressed further interest in receiving information via the web. Fifty-eight logged on and 44 tested. Those logging on expressed greater quit motivation, awareness of cancer genetic testing, and were more likely to be daily Internet users than those who did not log on. Approximately half of the sample made informed decisions to log on and to be tested.Conclusion: Interest in a web-based protocol for genetic susceptibility testing was high. Internet-delivered decision support was as likely as other modalities to yield informed decisions. Some subgroups may need additional support to improve their decision outcomes.

Development of an Interactive Decision Aid for Female BRCA1/BRCA2 Carriers

Shared decision making between patients and providers is becoming increasingly common, particularly when there is no clear preferred course of action. As a result, decision aids are being adopted with growing frequency and have been applied to many medical decision-making issues. One such issue where there is uncertainty is breast cancer risk management among BRCA1/BRCA2 carriers. We present the development of a CD-ROM decision aid to facilitate risk management decision making in this population. Our decision aid was developed with the intention of providing it through a randomized clinical trial. The CD-ROM is a multimedia, interactive intervention which provides information about breast cancer, risks associated with BRCA1 and BRCA2 mutations, risk management options for hereditary breast cancer, and a breast cancer risk management decision aid. The goal of this CD-ROM, offered as an adjunctive intervention, is to reduce decisional conflict and psychological distress and improve comprehension of risk information, decisional satisfaction, medical adherence, and quality of life for this population of women at increased risk for breast cancer.