Validation of a self-concept scale for lynch syndrome in different nationalities

Journal of Genetic Counseling

Volumn 20, Issue 3, 2011, Pages 308-313

  Petersen, Helle Vendel ^a,b   Domanska, Katarina ^b   Bendahl, Pär Ola ^b   Wong, Jiahui ^c   Carlsson, Christina ^b   Bernstein, Inge ^a   Esplen, Mary Jane ^c   Nilbert, Mef ^a,b  

^a HVIDOVRE HOSPITAL   (Denmark)

^b LUND UNIVERSITY   (Sweden)

^c UNIVERSITY OF TORONTO   (Canada)

Author keywords

Hereditary nonpolyposis colorectal cancer; HNPCC; Psychological impact; Questionnaire; Reliability; Validity

Indexed keywords

ANXIETY; ARTICLE; FEMALE; HEREDITARY NONPOLYPOSIS COLORECTAL CANCER; HUMAN; INFORMATION PROCESSING; MALE; MIDDLE AGED; PATHOPHYSIOLOGY; PSYCHOLOGICAL ASPECT; QUESTIONNAIRE; SELF CONCEPT; VALIDATION STUDY;

ANXIETY; COLORECTAL NEOPLASMS, HEREDITARY NONPOLYPOSIS; FEMALE; FOCUS GROUPS; HUMANS; MALE; MIDDLE AGED; QUESTIONNAIRES; SELF CONCEPT;

EID: 79958770668     PISSN: 10597700     EISSN: 15733599     Source Type: Journal    
DOI: 10.1007/s10897-011-9349-x     Document Type: Article

References (30)

1. 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. (Pubitemid 32701422)
2. 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.
3. 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.
4. 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. (Pubitemid 36851144)
5. 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.
6. 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. (Pubitemid 46788195)
7. d'Agincourt-Canning, L. (2001). Experiences of genetic risk: disclosure and the gendering of responsibility. Bioethics, 15, 231-247.
8. Esplen, M. J., Stuckless, N., Berk, T., Butler, K., & Gallinger, S. (2009a). The FAP self-concept scale (adult form). Familial Cancer, 8, 39-50.
9. 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.
10. 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.
11. 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. (Pubitemid 46211368)
12. 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.
13. 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. (Pubitemid 30243745)
14. 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. (Pubitemid 36020053)
15. 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.
16. 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. (Pubitemid 44465515)
17. Lynch, P. M. (2008). Standards of care in diagnosis and testing for hereditary colon cancer. Familial Cancer, 7, 65-72.
18. Lynch, H. T., & de la Chapelle, A. (2003). Hereditary colorectal cancer. The New England Journal of Medicine, 348, 919-932. (Pubitemid 36298000)
19. 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.
20. 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.
21. Markus, H. (1977). Self-schemas and processing information about the self. Journal of Personality and Social Psychology, 35, 63-78.
22. 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).
23. Meiser, B. (2005). Psychological impact of genetic testing for cancer susceptibility: an update of the literature. Psychooncology, 14, 1060-1074.
24. 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. (Pubitemid 38890845)
25. 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. (Pubitemid 30427699)
26. 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.
27. 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.
28. 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. (Pubitemid 40897824)
29. 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. (Pubitemid 46953715)
30. 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.