Psychological Impact of Genetic Testing for Hereditary Nonpolyposis Colorectal Cancer

Gritz, Ellen R.; Peterson, Susan K.; Vernon, Sally W.; Marani, Salma K.; Baile, Walter F.; Watts, Beatty G.; Amos, Christopher I.; Frazier, Marsha L.; Lynch, Patrick M.

doi:10.1200/jco.2005.07.102

Cited by 117 publications

(140 citation statements)

References 29 publications

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“…12,33,67 Some studies indicate that HNPCC carriers will first experience an immediate (2-4 weeks) but temporary increase in general anxiety after result disclosure. 56,68,69 Ultimately, there appears to be a return to baseline levels by 1 year with no significant change in psychological outcomes 33,68,69 (Table 2).…”

Section: Impact Of Genetic Test Resultsmentioning

confidence: 96%

“…The most robust predictor of future distress is distress at baseline. 32,49,[57][58][59]68,[74][75][76][77] Additional risk factors include prior psychiatric history of depression, 74 history of using psychotropic medications, 75 passive or avoidant coping styles, 51,75,[80][81][82] or inaccurate risk perception, [85][86][87] which put individuals at risk of experiencing distress throughout the process or many years after receiving their results. Other important risk factors for future distress include being the first member of the family to obtain genetic testing, 33 having children, 76 experiencing the death of a relative from hereditary cancer, 34,78 as well as experiencing unresolved loss 5 and complicated grief.…”

Section: Discussionmentioning

confidence: 99%

“…A psychiatric history of major or minor depression, 74 a history of psychopharmacologic medication use, 75 higher pretest anxiety, and higher levels of distress at the time of testing also increase the risk for anxiety or distress after receiving genetic testing results. 32,49,[57][58][59]68,[75][76][77] Studies also suggest that both women with children and the first family member to pursue testing are more likely to be distressed. 33,76 Another important risk factor for psychological distress during cancer genetic susceptibility testing for both BRCA1/BRCA2 and HNPCC is whether or not the individual undergoing testing has experienced the loss of a relative to a hereditary cancer, especially for individuals who had a parent die when they were children.…”

Section: Risk Factors For Distressmentioning

confidence: 99%

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Psychiatric implications of cancer genetic testing

Hirschberg

Chan‐Smutko

Pirl

2014

Cancer

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As genetic testing for hereditary cancer syndromes has transitioned from research to clinical settings, research regarding its accompanying psychosocial effects has grown. Men and women being tested for hereditary cancer syndromes may experience some psychological distress while going through the process of testing or after carrier status is identified. Psychological distress appears to decrease over the course of the first year and it is typically not clinically significant. Longer term studies show mixed results with some mutation carriers continuing to experience elevated distress. Baseline distress is the greatest risk factor for both immediate (weeks-12 months) and long-term psychological distress (18 mo-8 years post genetic testing). In addition to baseline psychological distress, other risk factors can be identified to help identify individuals who may need psychosocial interventions during the genetic testing process. The challenges of providing clinical care to the growing population of individuals identified to be at increased risk for heritable cancers present opportunities for research and new models of care. Cancer 2015;121:341-60. V C 2014 American Cancer Society.KEYWORDS: BRCA1, BRCA2, HNPCC, Lynch syndrome, genetic testing, unaffected carrier, carrier, hereditary cancer syndrome, riskreducing surgeries, psychosocial. INTRODUCTIONSeveral familial cancer syndromes that confer a high lifetime risk of cancer can be identified with genetic testing, and greater numbers of men and women will consider testing as the availability and public awareness of genetic testing for cancer susceptibility continue to increase. Research to date suggests that these individuals will have varied emotional responses to the process of genetic testing as well as its results.When genetic testing for cancer syndromes first transitioned from research protocols to clinics, there was initial concern that it would be similar to genetic testing for Huntington disease. Many worried that knowing they are at high risk for cancer in the future may be too distressing for some individuals, possibly even leading to suicide. However, several systematic reviews focusing primarily on hereditary breast and ovarian cancer (HBOC) and Lynch syndrome, also known as hereditary nonpolyposis colon cancer (HNPCC), have demonstrated that most individuals who have a mutation identified in an associated gene cope well with the knowledge of their genetic status. 1-3 Data regarding psychological implications of the genetic testing process are the most robust for women who present for HBOC risk assessment, which involves discussion of the BRCA1 and BRCA2 genes, although there are increasing studies for HNPCC, familial adenomatous polyposis (FAP), and other hereditary cancer syndromes.Although the rates of distress in individuals undergoing genetic testing vary, they appear to be relatively small. Studies have demonstrated that approximately 6% to 24% of individuals undergoing genetic testing for a BRCA1/BRCA2-associated or HNPCC-associated mutations repo...

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Section: Impact Of Genetic Test Resultsmentioning

confidence: 96%

Section: Discussionmentioning

confidence: 99%

Section: Risk Factors For Distressmentioning

confidence: 99%

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Psychiatric implications of cancer genetic testing

Hirschberg

Chan‐Smutko

Pirl

2014

Cancer

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“…Mean levels of distress 1 year after testing were within normal ranges; carriers showed a significant increase in distress and a significant decrease in mean depression scores [18,19]. Among unaffected carriers of HNPCC mutations, mean depression, anxiety, and cancer worries increased from baseline to 2 weeks and decreased from 2 weeks to 6 months postdisclosure [20]. The timing of measuring outcomes is therefore critical for drawing conclusions about impacts of HNPCC counseling and testing.…”

Section: Introduction and Aimmentioning

confidence: 95%

Monitoring coping style moderates emotional reactions to genetic testing for hereditary nonpolyposis colorectal cancer: a longitudinal study

et al. 2008

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“…In the 1990s, studies found that the majority of people who pursued genetic testing generally coped well with receipt of their genetic test results if provided with pretest and posttest genetic counseling by a genetic counselor (Hutson 2003;Meiser 2005;Gritz et al 2005). Since then, genetic counseling has become a significant component in the provision of multidisciplinary cancer risk assessment for clinical practice.…”

Section: Introductionmentioning

confidence: 99%

How do researchers manage genetic results in practice? The experience of the multinational Colon Cancer Family Registry

et al. 2013

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There is consensus internationally that research participants should be offered the opportunity to receive clinically relevant genetic information identified through research, but there is little empirical peer-reviewed work documenting this process. We report the experience of conducting genetic research with nearly 35,000 participants in the Colon Cancer Family Registry, based in the USA, Canada, Australia, and New Zealand. Investigators from six multinational sites provided information about disclosure protocols, implementation, and uptake of genetic results and made suggestions to inform practice. Across 5 of the 6 registry sites, 1,634 participants in families with mismatch repair or MutYH gene muta- Genet (2014) 5:99-108 DOI 10.1007 effort to return results. We offer suggestions in five key areas: (1) planning for the disclosure process, (2) participant information, (3) autonomy of participants, (4) monitoring scientific progress, and (5) involvement of stakeholders. Despite increasing discussion of the importance of returning incidental findings from genetic research, this paper highlights the considerable diversity, challenges, and costs faced in practice when returning expected findings with established utility and validity. We argue that more work is needed to ensure that genetic results in research are optimally managed.

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Psychological Impact of Genetic Testing for Hereditary Nonpolyposis Colorectal Cancer

Cited by 117 publications

References 29 publications

Psychiatric implications of cancer genetic testing

Psychiatric implications of cancer genetic testing

Monitoring coping style moderates emotional reactions to genetic testing for hereditary nonpolyposis colorectal cancer: a longitudinal study

How do researchers manage genetic results in practice? The experience of the multinational Colon Cancer Family Registry

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