Jada G. Hamilton

Emotional Distress Following Genetic Testing for Hereditary Breast and Ovarian Cancer: A Meta-Analytic Review

OBJECTIVE Meta-analysis was used to synthesize results of studies on emotional consequences of predictive genetic testing for BRCA1/2 mutations conferring increased risk of breast and ovarian cancer. DESIGN Studies assessing anxiety or cancer-specific distress before and after provision of test results (k = 20) were analyzed using a random-effects model. Moderator variables included country of data collection and personal cancer history of study participants. MAIN OUTCOME MEASURES Standardized mean gain effect sizes were calculated for mutation carriers, noncarriers, and those with inconclusive results over short (0-4 weeks), moderate (5-24 weeks), or long (25-52 weeks) periods of time after testing. RESULTS Distress among carriers increased shortly after receiving results and returned to pretesting levels over time. Distress among noncarriers and those with inconclusive results decreased over time. Some distress patterns differed in studies conducted outside the United States and for individuals with varying cancer histories. CONCLUSION Results underscore the importance of time; changes in distress observed shortly after test-result disclosure frequently differed from the pattern of distress seen subsequently. Although emotional consequences of this testing appear minimal, it remains possible that testing may affect cognitive and behavioral outcomes, which have rarely been examined through meta-analysis. Testing may also affect understudied subgroups differently.

Types, patterns, and predictors of coping with stress during pregnancy: Examination of the Revised Prenatal Coping Inventory in a diverse sample

The present study investigated coping in early, mid-, and late pregnancy in 321 ethnically and socioeconomically diverse women of varying medical risk. The goal was to determine how women cope with stress across pregnancy and to explore the association of coping with maternal characteristics, stress perceptions, disposition, and social support. Factor analysis of the Revised Prenatal Coping Inventory revealed three distinct types of coping: Planning-Preparation, Avoidance, and Spiritual-Positive Coping. Spiritual coping was used most frequently during pregnancy; avoidant coping was used least often. As hypothesized, use of spiritual coping and avoidance differed across pregnancy. Planning was used more consistently across time. Multivariate regression analyses revealed that the strongest predictors of planning were high optimism and pregnancy-specific distress. Avoidance was most strongly predicted by high state anxiety and pregnancy-specific distress. Greater religiosity and optimism were the strongest predictors of spiritual coping. These results add to a body of evidence that women use distinctive and varied strategies to manage stress prenatally. They also suggest that coping is responsive to changing demands across pregnancy and reflective of womens characteristics, perceptions, and social situations.

Sources of Uncertainty and Their Association with Medical Decision Making: Exploring Mechanisms in Fanconi Anemia

BackgroundEffects of different sources of medical uncertainty on people’s health-related cognitions, emotions, and decision making have yet to be systematically examined.PurposeThe aim of this study is to examine how uncertainties arising from different sources are associated with decision making regarding stem cell transplantation in Fanconi anemia, a rare, inherited bone marrow failure syndrome that typically presents during childhood.MethodsData were collected through a cross-sectional survey of 178 parents of 126 Fanconi anemia patients.ResultsTwo distinct sources of uncertainty were associated with decision outcomes: probability was associated with a lower likelihood of choosing stem cell transplantation, and ambiguity due to conflicting expert opinions was associated with greater decision-making difficulty. Concern about transplantation may mediate these associations.ConclusionsDifferent sources of uncertainty have different effects on Fanconi anemia treatment decisions, which may be mediated by parents’ emotional reactions. Further research is needed to elucidate these effects and help Fanconi anemia families cope with uncertainty.

Multifactorial beliefs about the role of genetics and behavior in common health conditions: Prevalence and associations with participant characteristics and engagement in health behaviors

Purpose:Many common health conditions arise due to a combination of genetic factors and lifestyle-related behaviors. People’s understanding of the multifactorial nature of health conditions has implications for their receptivity to health messages regarding genomics and medicine, and may be related to their adoption of protective health behaviors. Although past work has investigated aspects of either genetic or behavioral causal beliefs, multifactorial beliefs have not been evaluated systematically.Methods:Utilizing nationally representative cross-sectional data from the Health Information National Trends Survey, we examined the prevalence of multifactorial beliefs regarding the etiology of cancer, obesity, diabetes, heart disease, and hypertension, as well as associations between such beliefs and demographic, health history, and health behavior variables in the US population.Results:Among 3,630 participants, the vast majority (64.2–78.6%) endorsed multifactorial beliefs. The number of statistically significant associations was limited. Trends suggest that endorsement of multifactorial beliefs may differ by demographic and health history characteristics. Beliefs about the multifactorial etiology of cancer were associated with cancer screening behaviors. Multifactorial beliefs about other common health conditions were associated with few health promotion behaviors.Conclusion:These findings and recommendations for future research provide preliminary guidance for developing and targeting genomics-related health messages and communications.Genet Med 16 12, 913–921.

Primary care providers’ cancer genetic testing-related knowledge, attitudes, and communication behaviors: A systematic review and research agenda

BackgroundPrimary care providers (PCPs) can play a critical role in helping patients receive the preventive health benefits of cancer genetic risk information. Thus, the objective of this systematic review was to identify studies of US PCPs’ knowledge, attitudes, and communication-related behaviors regarding genetic tests that could inform risk-stratification approaches for breast, colorectal, and prostate cancer screening in order to describe current findings and research gaps.MethodsWe conducted a systematic search of six electronic databases to identify peer-reviewed empirical articles relating to US PCPs and genetic testing for breast, colorectal, or prostate cancer published in English from 2008 to 2016. We reviewed these data and used narrative synthesis methods to integrate findings into a descriptive summary and identify research needs.ResultsWe identified 27 relevant articles. Most focused on genetic testing for breast cancer (23/27) and colorectal cancer risk (12/27); only one study examined testing for prostate cancer risk. Most articles addressed descriptive research questions (24/27). Many studies (24/27) documented PCPs’ knowledge, often concluding that providers’ knowledge was incomplete. Studies commonly (11/27) examined PCPs’ attitudes. Across studies, PCPs expressed some concerns about ethical, legal, and social implications of testing. Attitudes about the utility of clinical genetic testing, including for targeted cancer screening, were generally favorable; PCPs were more skeptical of direct-to-consumer testing. Relatively fewer studies (9/27) examined PCPs’ communication practices regarding cancer genetic testing.DiscussionThis review indicates a need for investigators to move beyond descriptive research questions related to PCPs’ knowledge and attitudes about cancer genetic testing. Research is needed to address important gaps regarding the development, testing, and implementation of innovative interventions and educational programs that can improve PCPs’ genetic testing knowledge, assuage concerns about the appropriateness of cancer genetic testing, and promote open and effective patient-provider communication about genetic risk and genetic testing.Primary care providers (PCPs) can play a critical role in helping patients receive the preventive health benefits of cancer genetic risk information. Thus, the objective of this systematic review was to identify studies of US PCPs’ knowledge, attitudes, and communication-related behaviors regarding genetic tests that could inform risk-stratification approaches for breast, colorectal, and prostate cancer screening in order to describe current findings and research gaps. We conducted a systematic search of six electronic databases to identify peer-reviewed empirical articles relating to US PCPs and genetic testing for breast, colorectal, or prostate cancer published in English from 2008 to 2016. We reviewed these data and used narrative synthesis methods to integrate findings into a descriptive summary and identify research needs. We identified 27 relevant articles. Most focused on genetic testing for breast cancer (23/27) and colorectal cancer risk (12/27); only one study examined testing for prostate cancer risk. Most articles addressed descriptive research questions (24/27). Many studies (24/27) documented PCPs’ knowledge, often concluding that providers’ knowledge was incomplete. Studies commonly (11/27) examined PCPs’ attitudes. Across studies, PCPs expressed some concerns about ethical, legal, and social implications of testing. Attitudes about the utility of clinical genetic testing, including for targeted cancer screening, were generally favorable; PCPs were more skeptical of direct-to-consumer testing. Relatively fewer studies (9/27) examined PCPs’ communication practices regarding cancer genetic testing. This review indicates a need for investigators to move beyond descriptive research questions related to PCPs’ knowledge and attitudes about cancer genetic testing. Research is needed to address important gaps regarding the development, testing, and implementation of innovative interventions and educational programs that can improve PCPs’ genetic testing knowledge, assuage concerns about the appropriateness of cancer genetic testing, and promote open and effective patient-provider communication about genetic risk and genetic testing.

Passing years, changing fears? Conceptualizing and measuring risk perceptions for chronic disease in younger and middle-aged women.

As is true for many behavioral theory constructs, no consensus exists on how best to measure perceived risk; therefore, it is unclear whether different measures of disease risk perception are conceptually equivalent and whether such measures are equally appropriate for people with different objective disease risk. To investigate these issues, we used four commonly utilized risk perception items (measuring beliefs about personal risk, others’ risk, disease prevalence, and mortality) to assess susceptibility to cardiovascular disease, breast cancer, and lung cancer among 454 younger (ages 18–25) and 169 middle-aged (40–64) women. We examined age- and ethnicity-related differences in participants’ responses to the items. We also used structural equation modeling to test whether these items reflect a multidimensional, disease-specific latent construct of risk perception; and to test whether consistency exists in participants’ disease-specific risk perceptions. Despite differences in responses to individual items, hypothesized models of perceived risk fit both age groups, suggesting that risk perception can be conceptualized in younger and middle-aged women as a multidimensional construct that is specific to disease yet reflective of global risk-related beliefs.

What is a good medical decision? A research agenda guided by perspectives from multiple stakeholders

Informed and shared decision making are critical aspects of patient-centered care, which has contributed to an emphasis on decision support interventions to promote good medical decision making. However, researchers and healthcare providers have not reached a consensus on what defines a good decision, nor how to evaluate it. This position paper, informed by conference sessions featuring diverse stakeholders held at the 2015 Society of Behavioral Medicine and Society for Medical Decision Making annual meetings, describes key concepts that influence the decision making process itself and that may change what it means to make a good decision: interpersonal factors, structural constraints, affective influences, and values clarification methods. This paper also proposes specific research questions within each of these priority areas, with the goal of moving medical decision making research to a more comprehensive definition of a good medical decision, and enhancing the ability to measure and improve the decision making process.

Health messaging to individuals who perceive ambiguity in health communications: the promise of self-affirmation.

The perception that extant health messages about risk factors for a disease are ambiguous can be associated with greater anxiety and reduced interest in taking precautionary action. In this experiment, 247 female alcohol consumers who perceived varying degrees of ambiguity in current cancer prevention messages read an unambiguous article about the documented link between alcohol consumption and breast cancer. Before reading the article, half were given the opportunity to self-affirm by reflecting on an important value—a technique previously shown to enhance receptivity to threatening messages. The authors found that self-affirmation increased message acceptance among those who perceived relatively higher levels of ambiguity in cancer communications. Also, the relation between perceived ambiguity and risk perception became positive among self-affirmed participants, suggesting they had become less defensive. Self-affirmation may be an effective technique to use when delivering health communications to audiences who perceive a lack of consistency in prevention messages.

The use of haematopoietic stem cell transplantation in Fanconi anaemia patients: a survey of decision making among families in the US and Canada

Fanconi anaemia (FA) is a rare genetic disorder associated with bone marrow failure (BMF), congenital anomalies and cancer susceptibility. Stem cell transplantation (SCT) offers a potential cure for BMF or leukaemia, but incurs substantial risks. Little is known about factors influencing SCT decision making.

How Are Information Seeking, Scanning, and Processing Related to Beliefs About the Roles of Genetics and Behavior in Cancer Causation?

Understanding that cancer is caused by both genetic and behavioral risk factors is an important component of genomic literacy. However, a considerable percentage of people in the United States do not endorse such multifactorial beliefs. Using nationally representative cross-sectional data from the U.S. Health Information National Trends Survey (N = 2,529), we examined how information seeking, information scanning, and key information-processing characteristics were associated with endorsing a multifactorial model of cancer causation. Multifactorial beliefs about cancer were more common among respondents who engaged in cancer information scanning (p = .001), were motivated to process health information (p = .005), and reported a family history of cancer (p = .0002). Respondents who reported having previous negative information-seeking experiences had lower odds of endorsing multifactorial beliefs (p = .01). Multifactorial beliefs were not associated with cancer information seeking, trusting cancer information obtained from the Internet, trusting cancer information from a physician, self-efficacy for obtaining cancer information, numeracy, or being aware of direct-to-consumer genetic testing (ps > .05). Gaining additional understanding of how people access, process, and use health information will be critical for the continued development and dissemination of effective health communication interventions and for the further translation of genomics research to public health and clinical practice.