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Psychosocial Issues in Hereditary Colon Cancer Syndromes: Lynch Syndrome and Familial Adenomatous Polyposis

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Psychological Impact of Participating in Hereditary CRC Genetic Counseling and Testing

LS

Studies have examined the psychological status of individuals before, during, and after genetic counseling and testing for LS. Some studies have included only persons with no personal history of any LS-associated cancers,[45,46,47,48] and others have included both CRC patients and cancer-unaffected persons who are at risk for having a LS mutation.[49,50,51,52,53] Cross-sectional evaluations of the psychosocial characteristics of individuals undergoing LS genetic counseling and testing have indicated that mean pretest scores of psychological functioning for most participants are within normal limits,[49,50,51] although one study comparing affected and unaffected individuals showed that affected individuals had greater distress and worry associated with LS.[54]

Several longitudinal studies have evaluated psychological outcomes before genetic counseling and testing for LS and at multiple time periods in the year following disclosure of test results. A study that evaluated psychological distress 8 weeks postcounseling (prior to disclosure of test results) among both affected and unaffected individuals found a significant reduction in general anxiety, cancer worry, and distress.[54] In general, findings from studies within the time period immediately following disclosure of mutation status (e.g., 2 weeks to 1 month) suggested that MMR mutation carriers may experience increased general distress,[47,52] cancer-specific distress,[45,46] or cancer worries [52] relative to their pretest measurements. Carriers often experienced significantly higher distress following disclosure of test results compared with individuals who do not carry a mutation previously identified in the family (noncarrier).[45,46,47,52] However, in most cases, carriers' distress levels subsided during the course of the year after disclosure [47,52] and did not differ from pretest distress levels at 1 year postdisclosure.[45,46] Findings from these studies also indicated that noncarriers experienced a reduction or no change in distress up to a year following results disclosure.[45,46,47,52] A study that included unaffected individuals and CRC patients found that distress levels among patients did not differ between carriers and individuals who received results that were uninformative or showed a variant of unknown significance at any point up to 1 year posttest and were similar compared with pretest distress levels.[53]

Less is known about the long-term psychological impact of LS genetic counseling and testing beyond 1 year following notification of mutation carrier status. One study evaluated psychological outcomes up to 3 years after disclosure of mutation status.[45] Carriers' and noncarriers' 3-year mean scores on measures of depression, state anxiety, and cancer-specific distress were similar to scores obtained prior to genetic testing, with one exception: noncarriers' cancer-specific distress scores showed sustained decreased posttesting, and were significantly lower compared with their baseline scores and with carriers' scores at 1 year posttesting, with a similar trend observed at 3 years posttesting. In another study, 70 LS mutation carriers (including both cancer affected and unaffected persons) completed a cross-sectional survey between 6 months and 8.5 years after disclosure of test results; higher levels of cancer worry were associated with higher levels of perceived risk.[55]

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WebMD Public Information from the National Cancer Institute

Last Updated: May 16, 2012
This information is not intended to replace the advice of a doctor. Healthwise disclaims any liability for the decisions you make based on this information.

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