Psychosocial and behavioral impact of genetic counseling and testing. Breast Dis
Health Outcomes and Behavior Program, H Lee Moffitt Cancer Center and Research Institute, Tampa, FL 33612, USA.Breast disease 01/2006; 27(1):97-108.
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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- "scale (HADS), the State Trait Anxiety Inventory (STAI), the Impact of Event Scale (IES), and the Center for Epidemiological Studies Depression Scale (CES-D) (Kasparian et al. 2007; Payne et al. 2008; Vadaparampil et al. 2006 "
ABSTRACT: Approximately 25 % of individuals undergoing genetic counseling for cancer experiences clinically relevant levels of distress, anxiety and/or depression. However, these general psychological outcomes that are used in many studies do not provide detailed information on the specific psychosocial problems experienced by counselees. The aim of this review was to investigate the specific psychosocial issues encountered by individuals undergoing genetic counseling for cancer, and to identify overarching themes across these issues. A literature search was performed, using four electronic databases (PubMed, PsychInfo, CINAHL and Embase). Papers published between January 2000 and January 2013 were selected using combinations, and related indexing terms of the keywords: 'genetic counseling', 'psychology' and 'cancer'. In total, 25 articles met our inclusion criteria. We identified the specific issues addressed by these papers, and used meta-ethnography to identify the following six overarching themes: coping with cancer risk, practical issues, family issues, children-related issues, living with cancer, and emotions. A large overlap in the specific issues and themes was found between these studies, suggesting that research on specific psychosocial problems within genetic counseling has reached a point of saturation. As a next step, efforts should be made to detect and monitor these problems of counselees at an early stage within the genetic counseling process.
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- "While these findings are encouraging, clinicians should be aware that genomic test results may be associated with patients’ wellbeing. Especially for patients with high recurrence risk or discordant risk test results, it may be advisable to offer additional psychological counselling, as such counselling can reduce distress associated with the results of genetic tests . "
ABSTRACT: Gene expression profiling (GEP) is increasingly used in the rapidly evolving field of personalized medicine. We sought to evaluate the association between GEP-assessed of breast cancer recurrence risk and patients’ well-being. Participants were Dutch women from 10 hospitals being treated for early stage breast cancer who were enrolled in the MINDACT trial (Microarray In Node-negative and 1 to 3 positive lymph node Disease may Avoid ChemoTherapy). As part of the trial, they received a disease recurrence risk estimate based on a 70-gene signature and on standard clinical criteria as scored via a modified version of Adjuvant! Online. \Women completed a questionnaire 6–8 weeks after surgery and after their decision regarding adjuvant chemotherapy. The questionnaire assessed perceived understanding, knowledge, risk perception, satisfaction, distress, cancer worry and health-related quality of life (HRQoL), 6–8 weeks after surgery and decision regarding adjuvant chemotherapy. Women (n = 347, response rate 62%) reported high satisfaction with and a good understanding of the GEP information they received. Women with low risk estimates from both the standard and genomic tests reported the lowest distress levels. Distress was higher predominately among patients who had received high genomic risk estimates, who did not receive genomic risk estimates, or who received conflicting estimates based on genomic and clinical criteria. Cancer worry was highest for patients with higher risk perceptions and lower satisfaction. Patients with concordant high-risk profiles and those for whom such profiles were not available reported lower quality of life. Patients were generally satisfied with the information they received about recurrence risk based on genomic testing. Some types of genomic test results were associated with greater distress levels, but not with cancer worry or HRQoL. Trial registration ISRCTN: ISRCTN18543567
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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.
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