Psychosocial and behavioral impact of genetic counseling and testing. Breast Dis
ABSTRACT Over a decade has passed since the clinical availability of BRCA1/2 mutation testing for Hereditary Breast and Ovarian Cancer (HBOC). The purpose of this article is to review key areas of psychosocial and behavioral research related to genetic counseling and testing for BRCA1/2 mutations. Special attention will be given to understudied issues within each of these key areas. Where appropriate, the article will also highlight the clinical and research experiences of the authors. The first area that will be reviewed is the impact of genetic testing on psychological well-being. This will be followed by a brief discussion of a practical assessment strategy for psychosocial distress in clinical settings. Next, published data on the uptake of risk management options based on genetic testing results as well as the psychosocial impact of these behaviors will be reviewed. Thirdly, research focused on understanding the decision making at various points in the genetic counseling and testing process will also be examined. Finally, the available research on genetic counseling and testing in minority communities will be presented. By recognizing and addressing the psychosocial and behavioral issues faced by patients undergoing BRCA1/2 genetic counseling and testing, researchers and providers have the potential to maximize opportunities for prevention, early detection, and healthy coping.
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- "Moderately elevated levels of distress characterized by depressive symptoms, anxiety, and cancer-specific worry have been observed among men and women at increased risk for familial cancer [Mueller et al., 2001; Pasacreta, 2003; Vadaparampil et al., 2006; Taylor et al., 2007]. Furthermore, a substantial proportion (over 25% in some studies) of enrollees in high-risk cancer genetic clinic programs or women awaiting cancer genetic counseling have distress levels high enough to warrant psychological counseling prior to learning their genetic test results [George et al., 2002; Braithwaite et al., 2006; Masters and Spielmans, 2007; Sivell et al., 2007]. "
ABSTRACT: Elevated psychological distress has been observed among people at increased risk for familial cancer. Researchers consider religiosity and spirituality (RS) to be positive coping mechanisms associated with reduced psychological distress. Relatively little is known about the impact of RS on genomic health issues. The objectives of our study were: (1) describe the prevalence of RS and depressive symptoms and (2) explore how RS relates to psychological distress in a cohort of individuals with a > or =25% prior probability of a genetic predisposition to cancer. Participants (n = 99) were drawn from an African-American, Louisiana-based kindred with a mutation at the BRCA1 locus. This analysis reports findings from a survey assessing RS and the use of three types of religious coping styles: collaborative, self-directing, and deferring. Clinically significant depressive symptoms were relatively high (27%); with females (33%) more likely than males (17%) to report symptoms (P < 0.01). The majority of participants reported being highly religious. The most commonly employed religious problem solving style used by participants was collaborative (X=22.9; SD=5.8) versus self-directing (X=12.8; SD = 5.1) and deferring (X=19.9; SD = 6.3). We did not observe significant associations between RS indicators and psychological distress, nor did we observe appreciable differences related to gender or risk perception. Although RS beliefs and practices are important for many African-Americans, we did not find evidence that indicators of self-reported RS are associated with psychological distress prior to genetic counseling and testing.American Journal of Medical Genetics Part C Seminars in Medical Genetics 02/2009; 151C(1):13-21. DOI:10.1002/ajmg.c.30194 · 3.54 Impact Factor
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ABSTRACT: For newly diagnosed breast cancer patients, BRCA1/2 genetic counseling (GC) and/or testing has the greatest potential to affect treatment choices if it occurs prior to definitive surgery. This qualitative study sought to examine recently diagnosed breast cancer patients' experiences with pretest GC (n = 9). Study results show the primary reason most women attended GC was due to a family history of cancer. Most women expressed high levels of satisfaction with timing of GC regardless of whether they were referred prior to or after definitive surgical treatment. In this study, newly diagnosed breast cancer patients, particularly those who have already completed definitive surgery, may not be fully informed about the purpose and implications of BRCA1/2 GC and/or testing for treatment decisions had they been referred prior to definitive surgery for their breast cancer diagnosis. Thus, many women felt the information provided during GC had little utility with respect to their current breast cancer diagnosis.Journal of Psychosocial Oncology 02/2008; 26(4):33-52. DOI:10.1080/07347330802359586 · 1.04 Impact Factor
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ABSTRACT: Constructive Technology Assessment (CTA) is a means to guide early implementation of new developments in society, and can be used as an evaluation tool for Coverage with Evidence Development (CED). We used CTA for the introduction of a new diagnostic test in the Netherlands, the 70-gene prognosis signature (MammaPrint) for node-negative breast cancer patients. Studied aspects were (organizational) efficiency, patient-centeredness and diffusion scenarios. Pre-post structured surveys were conducted in fifteen community hospitals concerning changes in logistics and teamwork as a consequence of the introduction of the 70-gene signature. Patient-centeredness was measured by questionnaires and interviews regarding knowledge and psychological impact of the test. Diffusion scenarios, which are commonly applied in industry to anticipate on future development and diffusion of their products, have been applied in this study. Median implementation-time of the 70-gene signature was 1.2 months. Most changes were seen in pathology processes and adjuvant treatment decisions. Physicians valued the addition of the 70-gene signature information as beneficial for patient management. Patient-centeredness (n = 77, response 78 percent): patients receiving a concordant high-risk and discordant clinical low/high risk-signature showed significantly more negative emotions with respect to receiving both test-results compared with concordant low-risk and discordant clinical high/low risk-signature patients. The first scenario was written in 2004 before the introduction of the 70-gene signature and identified hypothetical developments that could influence diffusion; especially the "what-if" deviation describing a discussion on validity among physicians proved to be realistic. Differences in speed of implementation and influenced treatment decisions were seen. Impact on patients seems especially related to discordance and its successive communication. In the future, scenario drafting will lead to input for model-based cost-effectiveness analysis. Finally, CTA can be useful as a tool to guide CED by adding monitoring and anticipation on possible developments during early implementation, to the assessment of promising new technologies.International Journal of Technology Assessment in Health Care 02/2009; 25(1):73-83. DOI:10.1017/S0266462309090102 · 1.56 Impact Factor