Colon Cancer Screening Practices After Genetic Counseling and Testing for Hereditary Nonpolyposis Colorectal Cancer

Hadley, Donald W.; Jenkins, Jean; Dimond, Eileen; Carvalho, Maria de; Kirsch, Ilan R.; Palmer, Christina G.S.

doi:10.1200/jco.2004.06.128

Cited by 128 publications

(128 citation statements)

References 21 publications

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“…94 However, depressive symptoms in mutation carriers were associated with poor adherence to colonoscopy. 95 Positive family relationships also predicted increased adherence to recommended screening. 96 Specifically, greater family involvement, communication about risk, and encouragement were associated with a significantly shorter time since last colonoscopy.…”

Section: Hnpccmentioning

confidence: 98%

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: Hnpccmentioning

confidence: 98%

Psychiatric implications of cancer genetic testing

Hirschberg

Chan‐Smutko

Pirl

2014

Cancer

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“…Increased colon cancer screening in mutation carriers has been shown to reduce the mortality and morbidity associated with colon cancer [7], and is suggested to provide a reduction in worry and surveillance for those without the mutation [8]. Genetic counseling and testing for HNPCC influenced the use of colonic endoscopy and adherence to recommendations for colon cancer screening [9].…”

Section: Introduction and Aimmentioning

confidence: 99%

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 this process, the psychosocial context is important for translation of genetic risk information. Often there is a correlation between the educational level as well as income level and the willingness to be compliant (Halbert et al 2004;Hadley et al 2004). Accordingly, the process of counseling patients about genetic testing is complex and should not exclusively be the responsibility of a geneticist in isolation.…”

Section: Discussionmentioning

confidence: 99%

“…Several studies identified the "physician recommendation" as one of the most important factors in the patient's process of decision making about screening behavior (Hadley et al 2004;Kinney et al 2007;Tinley et al 2004;Lerman et al 1990;Geiger et al 2008). Burton et al (2010) concluded that genetic counseling offers a promising avenue for education and risk behavior reduction in persons at increased risk for cancer due to a familial or genetic predisposition and a teachable moment to introduce lifestyle modifications.…”

Section: Discussionmentioning

confidence: 99%

“…In a prospective survey by Hadley et al (2004), 56 clinically unaffected participants with increased prior risk for HNPCC (17 mutation positive and 39 mutation negative) were studied concerning colonoscopy screening behavior during a 6-to 12-month follow-up. Before genetic testing, 30 of 56 (54 %) participants had had at least one colonoscopy at an earlier time point.…”

Section: Hereditary Nonpolyposis Colon Cancermentioning

confidence: 99%

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Patient compliance based on genetic medicine: a literature review

Schneider

Schmidtke

2013

J Community Genet

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For this literature review, medical literature data bases were searched for studies on patient compliance after genetic risk assessment. The review focused on conditions where secondary or tertiary preventive options exist, namely cancer syndromes (BRCA-related cancer, HNPCC/colon cancer), hemochromatosis, thrombophilia, smoking cessation, and obesity. As a counterpart, patient compliance was assessed regarding medication adherence and medical advice in some of the most epidemiologically important conditions (including high blood pressure, metabolic syndrome, and coronary heart disease) after receiving medical advice based on nongenetic risk information or a combination of genetic and nongenetic risk information. In the majority of studies based on genetic risk assessments, patients were confronted with predictive rather than diagnostic genetic profiles. Most of the studies started from a knowledge base around 10 years ago when DNA testing was at an early stage, limited in scope and specificity, and costly. The major result is that overall compliance of patients after receiving a high-risk estimate from genetic testing for a given condition is high. However, significant behavior change does not take place just because the analyte is "genetic." Many more factors play a role in the complex process of behavioral tuning. Without adequate counseling and guidance, patients may interpret risk estimates of predictive genetic testing with an increase in fear and anxiety.

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Colon Cancer Screening Practices After Genetic Counseling and Testing for Hereditary Nonpolyposis Colorectal Cancer

Abstract: Genetic counseling and testing for HNPCC significantly influences the use of colonic endoscopy and adherence to recommendations for colon cancer screening.

Cited by 128 publications

References 21 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

Patient compliance based on genetic medicine: a literature review

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