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 following 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 US and for individuals with varying cancer histories. Conclusion-Resultsunderscore 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. Keywordspredictive genetic testing; hereditary breast and ovarian cancer; BRCA1/2 gene mutations; emotional distress; meta-analysis Breast cancer is the most prevalent cancer in women, apart from skin cancer, and is the secondleading cause of women's cancer deaths (American Cancer Society, 2007; US Cancer Statistics Working Group, 2006). As many as 10% of breast cancers are due to heredity (Claus, Schildkraut, Thompson, & Risch, 1996), with the majority caused by mutations in the tumor suppressor genes BRCA1 (Miki et al., 1994) or BRCA2 (Wooster et al., 1995). Female BRCA1/2 gene mutation carriers have a 35-84% chance of developing breast cancer, and a 10-Correspondence concerning this article should be addressed to Marci Lobel, Department of Psychology, Stony Brook University, Stony Brook, NY 11794-2500. marci.lobel@stonybrook.edu. Publisher's Disclaimer: The following manuscript is the final accepted manuscript. It has not been subjected to the final copyediting, fact-checking, and proofreading required for formal publication. It is not the definitive, publisher-authenticated version. The American Psychological Association and its Council of Editors disclaim any responsibility or liabilities for errors or omissions of this manuscript version, any version derived from this manuscript by NIH, or other third parties. The published version is available at www.apa.org/journals/hea NIH Public Access , 2005). By comparison, the average woman has a 7-10% chance of developing breast cancer and a 1-2% chance of developing ovarian cancer in her lifetime (Offit,...
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 women's characteristics, perceptions, and social situations.
Objective Hematopoietic stem cell transplantation (HSCT) is a demanding cancer treatment associated with enduring physical and psychological complications. Survivors' well-being may be further compromised by exposure to chronic stressors common to this population, including difficulties arising from costly medical care, changes in employment status, and health insurance coverage. Thus, we hypothesized that financial, employment, and insurance stressors (collectively referred to as economic survivorship stressors) would be associated with poorer health-related quality of life (HRQOL) among HSCT survivors. Methods Survivors (n=181; M=640 days post-transplant) completed measures of study variables through mailed questionnaires and telephone interviews. Hierarchical regression analyses were conducted to test the hypothesized associations between economic survivorship stressors and HRQOL, and to examine whether social and situational factors interact with survivors' stress perceptions to predict HRQOL. Results Greater financial and employment stress were associated with poorer functioning across multiple HRQOL domains, even after controlling for the effects of possible confounding sociodemographic and medical variables. Insurance stress was not associated with HRQOL. Some associations were moderated by situational factors including timing of the current financial crisis and portion of the transplant paid for by health insurance. Conclusions HSCT survivors can face serious economic challenges during recovery. Results suggest the value of viewing these challenges as chronic stressors capable of reducing survivors' mental and physical well-being. Identifying resources and skills that help survivors cope with these demands is an important goal for clinicians and researchers.
BACKGROUND: 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. METHODS: 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. RESULTS: 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. DISCUSSION: 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 patientprovider communication about genetic risk and genetic testing.
Background: Latinos, whose views are infrequently examined in genomic research, may be at risk of missing out on the benefits of genomic medicine. Aims: To explore this possibility, we conducted a qualitative study of awareness and attitudes about genetic testing among Latinos with lower acculturation in New York City. Methods: We conducted four focus groups (7 English-speaking men, 5 Spanish-speaking men, 13 English-speaking women and 13 Spanish-speaking women) to explore factors that influence the adoption of new innovations through the discussion of genetic testing in general, and a hypothetical vignette describing a genetic test for skin cancer risk, in particular. Results: Through inductive thematic text analysis of focus group transcripts, our multidisciplinary team identified themes within knowledge and attitudes, communication and sources of information, anticipated responses, factors that may increase adoption, and barriers to adoption of genetic testing. Specifically, a majority of participants expressed some degree of uncertainty regarding the purpose of genetic tests and information these tests provide, rarely discussed genetic testing with others in their social networks, and expressed concerns about the misuse of and possible adverse emotional responses to genetic information. However, participants also expressed high levels of interest in receiving a skin cancer genetic test in response to the vignette and believed that receiving actionable health information was a primary reason to consider testing. Gender-based differences in perceived barriers to testing emerged. Conclusions: The results highlight beliefs and barriers that future interventions could target to help ensure that Latinos have adequate understanding of and access to genomic medicine advances.
PurposeMany 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.MethodsUtilizing nationally-representative cross-sectional data from the Health Information National Trends Survey (HINTS), 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 U.S. population.ResultsAmong 3,630 participants, the vast majority (64.2-78.6%) endorsed multifactorial beliefs. The number of statistically significant associations were 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.ConclusionThese findings and recommendations for future research provide preliminary guidance for developing and targeting genomics-related health messages and communications.
Although the availability of direct-to-consumer (DTC) genetic testing has increased in recent years, the general public’s awareness of this testing is not well understood. This study examined levels of public awareness of DTC genetic testing, sources of information about testing, and psychosocial factors associated with awareness of testing in the U.S. Data were obtained from the nationally representative 2013 U.S. Health Information National Trends Survey. Guided by a social-cognitive conceptual framework, univariable and multivariable logistic regressions were conducted to identify factors associated with awareness of DTC genetic tests. Of 3,185 participants, 35.6% were aware of DTC genetic tests, with the majority learning about these tests through radio, television, and the Internet. In the final adjusted model, participants with annual incomes of $99,999 or less had lower odds of being aware of DTC genetic testing (ORs ranging from 0.46–0.61) than did those participants with incomes of $100,000 or more. The odds of awareness of DTC genetic tests were significantly higher for those who actively seek cancer information (OR = 1.91, 95% CI = 1.36–2.69), use the Internet (OR = 1.81, 95% CI = 1.05–3.13) and have high numeracy skills (OR = 1.67, 95% CI = 1.17–2.38). It will be critical for healthcare researchers and practitioners to understand predictors and consequences of the public’s awareness of DTC genetic tests, as well as how such awareness may translate into DTC genetic testing uptake, health behavior change, and ultimately disease prevention.
Guidelines recommend patients be informed of their incidental results (IR) when undergoing genomic sequencing (GS), yet there are limited tools to support patients' decisions about learning IR. The aim of this study is to develop and test the usability of a decision aid (DA) to guide patients' selection of IR, and to describe patients' preferences for learning IR following use of the DA. We developed and evaluated a DA using an iterative, mixed-methods process consisting of (1) prototype development, (2) feasibility testing, (3) cognitive interviews, (4) design and programming, and (5) usability testing. We created an interactive online DA called the Genomics ADvISER, a genomics decision AiD about Incidental SEquencing Results. The Genomics ADvISER begins with an educational whiteboard video, and then engages users in a values clarification exercise, knowledge quiz and final choice step, based on a 'binning' framework. Participants found the DA acceptable and intuitive to use. They were enthusiastic towards GS and IR; all selected multiple categories of IR. The Genomics ADvISER is a new patient-centered tool to support the clinical delivery of incidental GS results. The Genomics ADvISER fills critical care gaps, given the health care system's limited genomics expertise and capacity to convey the large volume of IR and their myriad of implications.
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