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Genetic Counseling Outcomes: Perceived Risk and Distress After Counseling for Hereditary Colorectal Cancer

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Journal of Genetic Counseling

Abstract

Genetic counseling may turn risk information into cancer prevention behavior by modifying health beliefs and cancer-related distress. We assessed the effect of genetic counseling on these factors in 101 adult first-degree-relatives of colorectal cancer patients from families with known or suspected hereditary nonpolyposis colorectal cancer. Before counseling and once afterward, subjects completed self-report measures of perceived lifetime risk and cancer-distress. Most persons overestimated their cancer risk, and higher perceived risk was associated with believing that colorectal cancer cannot be prevented. Individual perceived risk changed after counseling, although mean perceived risk was unchanged. After adjusting for baseline risk, older persons and those with higher estimated objective cancer risk had larger postcounseling decreases. Distress after counseling was positively correlated with baseline distress and anxiety symptoms, and inversely correlated with tolerance for ambiguity. The findings suggest counseling interventions that should increase the likelihood of screening and offer hypotheses for future research.

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References

  • American Cancer Society. (2002). Cancer Prevention and Early Detection: Facts and Figures 2002. Atlanta, GA: American cancer Socity.

    Google Scholar 

  • American Cancer Society. (2004). Cancer Facts and Figures 2004 Atlanta, GA: American Cancer Society.

    Google Scholar 

  • American Gastroenterological Association. (2004). The Facts About Colorectal Cancer. American Gastroenterological Association Web Page [On-line]. Available: http://www.gastro.org/clinicalRes/brochures/fact-cc.html

  • Audrain-McGovern, J., Hughes, C., & Patterson, F. (2003). Effecting behavior change: Awareness of family history. Am J Prev Med, 24, 183–189.

    Article  PubMed  Google Scholar 

  • Bapat, B. V., Madlensky, L., Temple, L. K., Hiruki, T., Redston, M., Baron, D. L., et al. (1999). Family history characteristics, tumor microsatellite instability and germline MSH2 and MLH1 mutations in hereditary colorectal cancer. Hum Genet, 104, 167–176.

    Article  CAS  PubMed  Google Scholar 

  • Beck, A. T., Epstein, N., Brown, G., & Steer, R. A. (1988a). An inventory for measuring clinical anxiety: Psychometric properties. J Consult Clin Psychol, 56, 893–897.

    Article  CAS  Google Scholar 

  • Beck, A. T., & Steer, R. A. (1991). Relationship between the Beck Anxiety Inventory and the Hamilton Anxiety Rating Scale with anxious outpatients. J anxiety Disord, 5, 213–223.

    Article  Google Scholar 

  • Beck, A. T., Steer, R. A., & Garbin, M. G. (1988b). Psychometric properties of the Beck Depression Inventory: Twenty-five years of evaluation. Clin Psycol Rev, 8, 77–100.

    Article  Google Scholar 

  • Beck, N. E., Tomlinson, I. P., Homfray, T., Hodgson, S. V., Harocopos, C. J., & Bodmer, W. F. (1997). Genetic testing is important in families with a history suggestive of hereditary non-polyposis colorectal cancer even if the Amsterdam criteria are not fulfilled. Br J Surg, 84, 233–237.

    Article  CAS  PubMed  Google Scholar 

  • Bisgaard, M. L., Jager, A. C., Myrhoj, T., Bernstein, I., & Nielsen, F. C. (2002). Hereditary non-polyposis colorectal cancer (HNPCC): Phenotype–genotype correlation between patients with and without identified mutation. Hum Mutat, 20, 20–27.

    Article  CAS  PubMed  Google Scholar 

  • Black, W. C., Nease, R. F., Jr., & Tosteson, A. N. (1995). Perceptions of breast cancer risk and screening effectiveness in women younger than 50 years of age. J Natl Cancer Inst, 87, 720–731.

    CAS  PubMed  Google Scholar 

  • Braithwaite, D., Emery, J., Walter, F., Prevost, A. T., & Sutton, S. (2004). Psychological impact of genetic counseling for familial cancer: A systematic review and meta-analysis. J Natl Cancer Inst, 96, 122–133.

    PubMed  Google Scholar 

  • Byers, T., Levin, B., Rothenberger, D., Dodd, G. D., & Smith, R. A. (1997). American cancer society guidelines for screening and surveillance for early detection of colorectal polyps and cancer: Update 1997. American cancer society detection and treatment advisory group on colorectal cancer. CA Cancer J Clin, 47, 154–160.

    CAS  Google Scholar 

  • Byles, J. E., Sanson-Fisher, R. W., Redman, S., Reid, A. L., & Agrez, M. (1992). Early detection of colorectal cancer: A profile of current practice. Cancer Detect Prev, 16, 245–252.

    CAS  PubMed  Google Scholar 

  • Carver, C. S., Pozo, C., Harris, S. D., Noriega, V., Scheier, M. F., Robinson, D. S., et al. (1993). How coping mediates the effect of optimism on distress: A study of women with early stage breast cancer. J Pers Soc Psychol, 65, 375–390.

    Article  CAS  PubMed  Google Scholar 

  • Carver, C. S., Scheier, M. F., & Weintraub, J. K. (1989). Assessing coping strategies: A theoretically based approach. J Pers Soc Psychol, 56, 267–283.

    Article  CAS  PubMed  Google Scholar 

  • CDC. (2001a). Colorectal Cancer Screening Remains Underutilized: CDC Report (Rep. No. 9).

  • CDC. (2001b). Trends in screening for colorectal cancer—United States, 1997 and 1999. MMWR Morb Mortal Wkly Rep, 50, 162–166.

    Google Scholar 

  • CDC. (2002). National Health Interview Survey. Available: http://www.cdc.gov/nchs/nhis.htm [On-line].

  • Chiriboga, D. A. (1977). Life event weighting systems: A comparative analysis. J Psychol Res, 21, 415–422.

    CAS  Google Scholar 

  • Clavel-Chapelon, F., Joseph, R., & Goulard, H. (1999). Surveillance behavior of women with a reported family history of colorectal cancer. Prev Med, 28, 174–178.

    Article  CAS  PubMed  Google Scholar 

  • Codori, A. M., Petersen, G. M., Brensinger, J. D., Young, C., Larkin, E. K., Bushey, M. T., et al. (1997). Inconclusive HNPCC gene test result unrealistically reduces colon cancer fear and risk perception. Ann Behav Med, 19, S177.

    Google Scholar 

  • Codori, A. M., Petersen, G. M., Miglioretti, D. L., & Boyd, P. (2001). Health beliefs and endoscopic screening for colorectal cancer: Potential for cancer prevention. Prev Med, 33, 128–136.

    CAS  PubMed  Google Scholar 

  • Codori, A. M., Petersen, G. M., Miglioretti, D. L., Larkin, E. K., Bushey, M. T., Young, C., et al. (1999). Attitudes toward colon cancer gene testing: Factors predicting test uptake. Cancer Epidemiol Biomarkers Prev, 8, 345–351.

    CAS  PubMed  Google Scholar 

  • Collins, V., Halliday, J., Warren, R., & Williamson, R. (2000a). Assessment of education and counselling offered by a familial colorectal cancer clinic. Clin Genet, 57, 48–55.

    Article  CAS  Google Scholar 

  • Collins, V., Halliday, J., Warren, R., & Williamson, R. (2000b). Cancer worries, risk perceptions and associations with interest in DNA testing and clinic satisfaction in a familial colorectal cancer clinic. Clin Genet, 58, 460–468.

    Article  CAS  Google Scholar 

  • Croyle, R. T., Dutson, D. S., Tran, V. T., & Sun, Y. C. (1995). Need for certainty and interest in genetic testing. Womens Health, 1, 329–339.

    CAS  PubMed  Google Scholar 

  • Dolan, N. C., Lee, A. M., & McDermott, M. M. (1997). Age-related differences in breast carcinoma knowledge, beliefs, and perceived risk among women visiting an academic general medicine practice. Cancer, 80, 413–420.

    Article  CAS  PubMed  Google Scholar 

  • Evans, D. G., Blair, V., Greenhalgh, R., Hopwood, P., & Howell, A. (1994). The impact of genetic counselling on risk perception in women with a family history of breast cancer. Br J Cancer, 70, 934–938.

    CAS  PubMed  Google Scholar 

  • Frenkel-Brunswik, E. (1949). Intolerance of ambiguity as an emotional and perceptual personality variable. J Pers, 18, 108–143.

    Google Scholar 

  • Fuchs, C. S., Giovannucci, E. L., Colditz, G. A., Hunter, D. J., Speizer, F. E., & Willett, W. C. (1994). A prospective study of family history and the risk of colorectal cancer. N Engl J Med, 331, 1669–1674.

    CAS  PubMed  Google Scholar 

  • Geller, G., Tambor, E. S., Chase, G. A., & Holtzman, N. A. (1993). Measuring physicians’ tolerance for ambiguity and its relationship to their reported practices regarding genetic testing. Med Care, 31, 989–1001.

    CAS  PubMed  Google Scholar 

  • Genuardi, M., Anti, M., Capozzi, E., Leonardi, F., Fornasarig, M., Novella, E., et al. (1998). MLH1 and MSH2 constitutional mutations in colorectal cancer families not meeting the standard criteria for hereditary nonpolyposis colorectal cancer. Int J Cancer, 75, 835–839.

    Article  CAS  PubMed  Google Scholar 

  • Grunfeld, E. A., Ramirez, A. J., Hunter, M. S., & Richards, M. A. (2002). Women’s knowledge and beliefs regarding breast cancer. Br J Cancer, 86, 1373–1378.

    Article  CAS  PubMed  Google Scholar 

  • Helmes, A. W., Bowen, D. J., & Bengel, J. (2002). Patient preferences of decision-making in the context of genetic testing for breast cancer risk. Genet Med, 4, 150–157.

    Article  PubMed  Google Scholar 

  • Hobbs, P., Smith, A., George, W. D., & Sellwood, R. A. (1980). Acceptors and rejectors of an invitation to undergo breast screening compared with those who referred themselves. J Epidemiol Community Health, 34, 19–22.

    CAS  PubMed  Google Scholar 

  • Hurst, M. W., Jenkins, C. D., & Rose, R. M. (1978). The assessment of life change stress: A comparative and methodological inquiry. Psychol Med, 40, 126–141.

    CAS  Google Scholar 

  • Hutter, P., Couturier, A., Membrez, V., Joris, F., Sappino, A. P., & Chappuis, P. O. (1998). Excess of hMLH1 germline mutations in Swiss families with hereditary non-polyposis colorectal cancer. Int J Cancer, 78, 680–684.

    Article  CAS  PubMed  Google Scholar 

  • Johnson, K. A., Trimbath, J. D., Petersen, G. M., Griffin, C. A., & Giardiello, F. M. (2002). Impact of genetic counseling and testing on colorectal cancer screening behavior. Genet Test, 6, 303–306.

    Article  PubMed  Google Scholar 

  • Kash, K. M., Holland, J. C., Halper, M. S., & Miller, D. G. (1992). Psychological distress and surveillance behaviors of women with a family history of breast cancer. J Natl Cancer Inst, 84, 24–30.

    CAS  PubMed  Google Scholar 

  • Keller, M., Jost, R., Mastromarino Haunstetter, C., Kienle, P., Knaebel, H.-P., Gebert, J., et al. (2002). Comprehensive genetic counseling for families at risk for HNPCC: Impact on distress and perceptions. Genet Test, 6, 291–302.

    Article  CAS  PubMed  Google Scholar 

  • Kessler, S. (1989). Psychological aspects of genetic counseling: VI. A critical review of the literature dealing with education and reproduction. Am J Med. Genet, 34, 340–353.

    Article  CAS  PubMed  Google Scholar 

  • Kievit, W., de Bruin, J. H., Adang, E. M., Ligtenberg, M. J., Nagengast, F. M., van Krieken, J. H., et al. (2004). Current clinical selection strategies for identification of hereditary non-polyposis colorectal cancer families are inadequate: A meta-analysis. Clin Genet, 65, 308–316.

    Article  CAS  PubMed  Google Scholar 

  • Killgore, W. D. (1999). The visual analog mood scale: Can a signle-item scale accurately classify depressive mood state? Psychol Rep, 85, 1238–1243.

    CAS  PubMed  Google Scholar 

  • Lerman, C., Hughes, C., Benkendorf, J. L., Biesecker, B., Kerner, J., Willison, J., et al. (1999). Racial differences in testing motivation and psychological distress following pretest education for BRCA1 gene testing. Cancer Epidemiol Biomarkers Prev, 8, 361–367.

    CAS  PubMed  Google Scholar 

  • Lerman, C., Schwartz, M. D., Miller, S. M., Daly, M., Sands, C., & Rimer, B. K. (1996). A randomized trial of breast cancer risk counseling: Interacting effects of counseling, educational level, and coping style. Health Psychol, 15, 75–83.

    Article  CAS  PubMed  Google Scholar 

  • Likert, R. (1932). A technique for the measurement of attitudes. Archives Psychol, 22(140), 55.

    Google Scholar 

  • Likert, R., Roslow, S., & Murphy, G. (1934). A simple and reliable method of scoring the Thurstone attitude scales. J Soc Psychol, 5, 228–238.

    Google Scholar 

  • Liu, B., Parsons, R., Papadopoulos, N., Nicolaides, N. C., Lynch, H. T., Watson, P., et al. (1996). Analysis of mismatch repair genes in hereditary non-polyposis colorectal cancer patients. Nat Med, 2, 169–174.

    Article  CAS  PubMed  Google Scholar 

  • Louks, J., Hayne, C., & Smith, J. (1989). Replicated factor structure of the Beck Depression Inventory. J Nerv Ment Dis, 177, 473–479.

    CAS  PubMed  Google Scholar 

  • Manne, S., Markowitz, A., Winawer, S., Meropol, N. J., Haller, D., Rakowski, W., et al. (2002). Correlates of colorectal cancer screening compliance and stage of adoption among siblings of individuals with early onset colorectal cancer. Health Psychol, 21, 3–15.

    Article  PubMed  Google Scholar 

  • McCormack, H. M., Horne, D. J., & Sheather, S. (1988). Clinical applications of visual analog scales: A critical review. Psychol Med, 18, 1007–1019.

    CAS  PubMed  Google Scholar 

  • Mecklin, J. P. (1987). Frequency of hereditary colorectal carcinoma. Gastroenterology, 93, 1021–1025.

    CAS  PubMed  Google Scholar 

  • Miller, M. D., & Ferris, D. G. (1993). Measurement of subjective phenomena in primary care research: The Visual analog Scale. Fam Pract Res J, 13, 15–24.

    CAS  PubMed  Google Scholar 

  • Muthen, B. (1984). A general structural equation model with dichotomous, ordered categorical and continuous latent variable indicators. Psychometrika, 54, 557–585.

    Google Scholar 

  • Muthen, L. K., & Muthen, B. O. (1998). Mplus: The Comprehensive Modeling Program for Applied Researches, User’s Guide. [Computer software]. Los Angeles, CA: Muthen & Muthen.

    Google Scholar 

  • National Cancer Institute. (2000). SEER Cancer Statistics Review 1973–1999.

  • Nordin, K., Liden, A., Hansson, M., Rosenquist, R., & Berglund, G. (2002). Coping style, psychological distress, risk perception, and satisfaction in subjects attending genetic counselling for hereditary cancer. J Med Genet, 39, 689–694.

    Article  CAS  PubMed  Google Scholar 

  • Oliver, J. M., & Simmons, M. E. (1985). Affective disorders and depression as measured by the Diagnostic Interview Schedule and the Beck Depression Inventory in an unselected adult population. J Clin Psychol, 41, 469–477.

    CAS  PubMed  Google Scholar 

  • Park, J. G., Vasen, H. F., Park, Y. J., Park, K. J., Peltomaki, P., de Leon, M. P., et al. (2002). Suspected HNPCC and Amsterdam criteria II: Evaluation of mutation detection rate, an international collaborative study. Int J Colorectal Dis, 17, 109–114.

    PubMed  Google Scholar 

  • Petersen, G. M. (2002). Barriers to preventive intervention. Gastroenterol Clin North Am, 31, 1061–1068, viii.

    Article  PubMed  Google Scholar 

  • Petersen, G. M., Brensinger, J. D., Johnson, K. A., & Giardiello, F. M. (1999). Genetic testing and counseling for hereditary forms of colorectal cancer. Cancer, 86, 2540–2550.

    Article  CAS  PubMed  Google Scholar 

  • Ponz de Leon, M., Sassatelli, R., Sacchetti, C., Zanghieri, G., Scalmati, A., & Roncucci, L. (1989). Familial aggregation of tumors in the three-year experience of a population-based colorectal cancer registry. Cancer Res, 49, 4344–4348.

    CAS  PubMed  Google Scholar 

  • Ramsey, S. D., Wilson, S., Spencer, A., Geidzinska, A., & Newcomb, P. (2003). Attitudes towards genetic screening for predisposition to colon cancer among cancer patients, their relatives and members of the community. Results of focus group interviews. Community Genet, 6, 29–36.

    Article  PubMed  Google Scholar 

  • Reyes, C. M., Allen, B. A., Terdiman, J. P., & Wilson, L. S. (2002). Comparison of selection strategies for genetic testing of patients with hereditary nonpolyposis colorectal carcinoma: Effectiveness and cost-effectiveness. Cancer, 95, 1848–1856.

    Article  PubMed  Google Scholar 

  • Rhyu, M. S. (1996). Molecular mechanisms underlying hereditary nonpolyposis colorectal carcinoma. J Natl Cancer Inst, 88, 240–251.

    CAS  PubMed  Google Scholar 

  • Rothemund, Y., Paepke S., & Flor, H. (2001). Perception of risk, anxiety and health behaviors in women at risk for breast cancer. Int J Med Genet, 8, 230–239.

    Google Scholar 

  • Schwartz, M. D., Taylor, K. L., Willard, K. S., Siegel, J. E., Lamdan, R. M., & Moran, K. (1999). Distress, personality, and mammography utilization among women with a family history of breast cancer. Health Psychol, 18, 327–332.

    Article  CAS  PubMed  Google Scholar 

  • Shvartzman, P., Rivkind, E., Neville, A., Friger, M., & Sperber, A. D. (2000). Screening intention and practice among first-degree relatives of colorectal cancer patients in southern Israel. Isr Med Assoc J, 2, 675–678.

    CAS  PubMed  Google Scholar 

  • Steer, R. A., Beck, A. T., & Brown, G. (1989). Sex differences on the revised Beck Depression Inventory for outpatients with affective disorders. J Pers Assess, 53, 693–702.

    CAS  PubMed  Google Scholar 

  • Syngal, S., Fox, E. A., Eng, C., Kolodner, R. D., & Garber, J. E. (2000). Sensitivity and specificity of clinical criteria for hereditary non-polyposis colorectal cancer associated mutations in MSH2 and MLH1. J Med Genet, 37, 641–645.

    Article  CAS  PubMed  Google Scholar 

  • Taylor, K. L., Shelby, R. A., Schwartz, M. D., Ackerman, J., LaSalle, V. H., Gelmann, E. P., et al. (2002). The impact of item order on ratings of cancer risk perception. Cancer Epidemiol Biomarkers Prev, 11, 654–659.

    PubMed  Google Scholar 

  • Thrasher, J. F., Cummings, K. M., Michalek, A. M., Mahoney, M. C., Moysich, K. B., & Pillittere, D. M. (2002). Colorectal cancer screening among individuals with and without a family history. J Public Health Manag Pract, 8, 1–9.

    Google Scholar 

  • Umar, A., Boland, C. R., Terdiman, J. P., Syngal, S., de la, C. A., Ruschoff, J., et al. (2004). Revised Bethesda Guidelines for hereditary nonpolyposis colorectal cancer (Lynch syndrome) and microsatellite instability. J Natl Cancer Inst, 96, 261–268.

    CAS  PubMed  Google Scholar 

  • Vasen, H. F., Mecklin, J. P., Khan, P. M., & Lynch, H. T. (1991). The International Collaborative Group on Hereditary Non-Polyposis Colorectal Cancer (ICG-HNPCC). Dis Colon Rectum, 34, 424–425.

    CAS  PubMed  Google Scholar 

  • Vernon, S. W. (1999). Risk perception and risk communication for cancer screening behaviors: A review. J Natl Cancer Inst Monogr, 25, 101–119.

    PubMed  Google Scholar 

  • Vernon, S. W., Myers, R. E., Tilley, B. C., & Li, S. (2001). Factors associated with perceived risk in automotive employees at increased risk of colorectal cancer. Cancer Epidemiol Biomarkers Prev, 10, 35–43.

    CAS  PubMed  Google Scholar 

  • Wewers, M. E., & Lowe, N. K. (1990). A critical review of visual analog scales in the measurement of clinical phenomena. Res Nurs Health, 13, 227–236.

    CAS  PubMed  Google Scholar 

  • Wijnen, J., Khan, P. M., Vasen, H., Menko, F., van der, K. H., van den, B. M. et al. (1996). Majority of hMLH1 mutations responsible for hereditary nonpolyposis colorectal cancer cluster at the exonic region 15–16. Am J Hum Genet, 58, 300–307.

    CAS  PubMed  Google Scholar 

  • Winawer, S., Fletcher, R., Rex, D., Bond, J., Burt, R., Ferrucci, J., et al. (2003). Colorectal cancer screening and surveillance: Clinical guidelines and rationale—Update based on new evidence. Gastroenterology, 124, 544–560.

    Article  PubMed  Google Scholar 

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Codori, AM., Waldeck, T., Petersen, G.M. et al. Genetic Counseling Outcomes: Perceived Risk and Distress After Counseling for Hereditary Colorectal Cancer. J Genet Counsel 14, 119–132 (2005). https://doi.org/10.1007/s10897-005-4062-2

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