Abstract
Learning about hereditary cancer may influence an individual’s self-concept, which otherwise represents a complex but stable cognitive structure. Recently, a 20-statement self-concept scale, with subscales related to stigma-vulnerability and bowel symptom-related anxiety, was developed for Lynch syndrome. We compared the performance of this scale in 591 mutation carriers from Denmark, Sweden and Canada. Principal component analysis identified two sets of linked statements—the first related to feeling different, isolated and labeled, and the second to concern and worry about bowel changes. The scale performed consistently in the three countries. Minor differences were identified, with guilt about passing on a defective gene and feelings of losing one’s privacy being more pronounced among Canadians, whereas Danes more often expressed worries about cancer. Validation of the Lynch syndrome self-concept scale supports its basic structure, identifies dependence between the statements in the subscales and demonstrates its applicability in different Western populations.
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Aktan-Collan, K., Haukkala, A., Mecklin, J. P., Uutela, A., & Kaariainen, H. (2001). Psychological consequences of predictive genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a prospective follow-up study. International Journal of Cancer, 93, 608–611.
Bjorvatn, C., Eide, G. E., Hanestad, B. R., & Havik, O. E. (2008). Anxiety and depression among subjects attending genetic counseling for hereditary cancer. Patient Education and Counseling, 71, 234–243.
Bjorvatn, C., Eide, G. E., Hanestad, B. R., Hamang, A., & Havik, O. E. (2009). Intrusion and avoidance in subjects undergoing genetic investigation and counseling for hereditary cancer. Supportive Care in Cancer, 17, 1371–1381.
Bleiker, E. M., Hahn, D. E., & Aaronson, N. K. (2003). Psychosocial issues in cancer genetics—current status and future directions. Acta Oncológica, 42, 276–286.
Cha, E. S., Kim, K. H., & Erlen, J. A. (2007). Translation of scales in cross-cultural research: issues and techniques. Journal of Advanced Nursing, 58, 386–395.
Collins, V. R., Meiser, B., Ukoumunne, O. C., Gaff, C., St John, D. J., & Halliday, J. L. (2007). The impact of predictive genetic testing for hereditary nonpolyposis colorectal cancer: three years after testing. Genetics in Medicine, 9, 290–297.
d’Agincourt-Canning, L. (2001). Experiences of genetic risk: disclosure and the gendering of responsibility. Bioethics, 15, 231–247.
Esplen, M. J., Stuckless, N., Berk, T., Butler, K., & Gallinger, S. (2009a). The FAP self-concept scale (adult form). Familial Cancer, 8, 39–50.
Esplen, M. J., Stuckless, N., Hunter, J., Liede, A., Metcalfe, K., Glendon, G., et al. (2009b). The BRCA Self-Concept Scale: a new instrument to measure self-concept in BRCA1/2 mutation carriers. Psychooncology, 18(11), 1216–1229.
Esplen, M. J., Stuckless, N., Wong, J., Gallinger, S., Aronson, M., Rothenmund, H., et al. (2010). Development and validation of an instrument to measure the impact of genetic testing on self-concept in hereditary non-polypos colorectal cancer (HNPCC). In J. C. Holland & M. Watson (Eds.), IPOS 12th World Congress of Psycho-Oncology 25–29 May 2010; QC, Canada (pp. 161). Wiley-Blackwell.
Gritz, E. R., Peterson, S. K., Vernon, S. W., Marani, S. K., Baile, W. F., Watts, B. G., et al. (2005). Psychological impact of genetic testing for hereditary nonpolyposis colorectal cancer. Journal of Clinical Oncology, 23, 1902–1910.
Hamilton, J. G., Lobel, M., & Moyer, A. (2009). Emotional distress following genetic testing for hereditary breast and ovarian cancer: a meta-analytic review. Health Psychology, 28, 510–518.
Jarvinen, H. J., Aarnio, M., Mustonen, H., Ktan-Collan, K., Aaltonen, L. A., Peltomaki, P., et al. (2000). Controlled 15-year trial on screening for colorectal cancer in families with hereditary nonpolyposis colorectal cancer. Gastroenterology, 118, 829–834.
Keller, M., Jost, R., Haunstetter, C. M., Kienle, P., Knaebel, H. P., Gebert, J., et al. (2002). Comprehensive genetic counseling for families at risk for HNPCC: impact on distress and perceptions. Genetic Testing, 6, 291–302.
Keller, M., Jost, R., Haunstetter, C. M., Sattel, H., Schroeter, C., Bertsch, U., et al. (2008). Psychosocial outcome following genetic risk counselling for familial colorectal cancer. A comparison of affected patients and family members. Clinical Genetics, 74, 414–424.
Lindor, N. M., Petersen, G. M., Hadley, D. W., Kinney, A. Y., Miesfeldt, S., Lu, K. H., et al. (2006). Recommendations for the care of individuals with an inherited predisposition to Lynch syndrome: a systematic review. JAMA, 296, 1507–1517.
Lynch, P. M. (2008). Standards of care in diagnosis and testing for hereditary colon cancer. Familial Cancer, 7, 65–72.
Lynch, H. T., & de la Chapelle, A. (2003). Hereditary colorectal cancer. The New England Journal of Medicine, 348, 919–932.
Lynch, H. T., Lynch, J. F., Lynch, P. M., & Attard, T. (2008). Hereditary colorectal cancer syndromes: molecular genetics, genetic counseling, diagnosis and management. Familial Cancer, 7, 27–39.
Lynch, H. T., Lynch, P. M., Lanspa, S. J., Snyder, C. L., Lynch, J. F., & Boland, C. R. (2009). Review of the Lynch syndrome: history, molecular genetics, screening, differential diagnosis, and medicolegal ramifications. Clinical Genetics, 76, 1–18.
Markus, H. (1977). Self-schemas and processing information about the self. Journal of Personality and Social Psychology, 35, 63–78.
Markus, H., & Wurf, E. (1987). The dynamic self-concept: A social psychological perspective. In M. R. Rosenweig (Ed.), Annual review of psychology (pp. 299–337).
Meiser, B. (2005). Psychological impact of genetic testing for cancer susceptibility: an update of the literature. Psychooncology, 14, 1060–1074.
Murakami, Y., Okamura, H., Sugano, K., Yoshida, T., Kazuma, K., Akechi, T., et al. (2004). Psychologic distress after disclosure of genetic test results regarding hereditary nonpolyposis colorectal carcinoma. Cancer, 101, 395–403.
Renkonen-Sinisalo, L., Aarnio, M., Mecklin, J. P., & Jarvinen, H. J. (2000). Surveillance improves survival of colorectal cancer in patients with hereditary nonpolyposis colorectal cancer. Cancer Detection and Prevention, 24, 137–142.
Semple, C. J. P. B. R., & McCance, T. D. M. B. H. (2010). Parents’ experience of cancer who have young children: a literature review. [Article]. Cancer Nursing, 33, 110–118.
Stupart, D. A., Goldberg, P. A., Algar, U., & Ramesar, R. (2009). Surveillance colonoscopy improves survival in a cohort of subjects with a single mismatch repair gene mutation. Colorectal Disease, 11, 126–130.
Vadaparampil, S. T., Ropka, M., & Stefanek, M. E. (2005). Measurement of psychological factors associated with genetic testing for hereditary breast, ovarian and colon cancers. Familial Cancer, 4, 195–206.
Vasen, H. F., Moslein, G., Alonso, A., Bernstein, I., Bertario, L., Blanco, I., et al. (2007). Guidelines for the clinical management of Lynch syndrome (hereditary non-polyposis cancer). Journal of Medical Genetics, 44, 353–362.
Vasen, H. F., Moslein, G., Alonso, A., Aretz, S., Bernstein, I., Bertario, L., et al. (2010). Recommendations to improve identification of hereditary and familial colorectal cancer in Europe. Familial Cancer, 9, 109–115.
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The Danish Cancer Fund and the Hvidovre University Hospital financially supported the study.
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Petersen, H.V., Domanska, K., Bendahl, PO. et al. Validation of a Self-Concept Scale for Lynch Syndrome in Different Nationalities. J Genet Counsel 20, 308–313 (2011). https://doi.org/10.1007/s10897-011-9349-x
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DOI: https://doi.org/10.1007/s10897-011-9349-x