Knowledge and expectations of women undergoing cancer genetic risk assessment: A qualitative analysis of free-text questionnaire comments

Journal of Genetic Counseling

Volumn 16, Issue 4, 2007, Pages 505-514

  Phelps, C ^a,b   Wood, F ^a   Bennett, P ^b   Brain, K ^a   Gray, J ^c  

^a CARDIFF UNIVERSITY SCHOOL OF MEDICINE   (United Kingdom)

^b CARDIFF UNIVERSITY   (United Kingdom)

^c CARDIFF AND VALE UNIVERSITY HEALTH BOARD   (United Kingdom)

Author keywords

Breast ovarian cancer; Knowledge; Qualitative; Risk assessment; Uncertainty

Indexed keywords

ADULT; ARTICLE; BREAST CANCER; CANCER GENETICS; CANCER RISK; CONTROLLED STUDY; DATA ANALYSIS; EXPECTATION; FAMILIAL CANCER; FEMALE; GENETIC ASSOCIATION; GENETIC RISK; GENETIC SERVICE; HUMAN; KNOWLEDGE; LEARNING; MAJOR CLINICAL STUDY; MEDICAL RESEARCH; OVARY CANCER; PSYCHOLOGICAL ASPECT; QUALITATIVE ANALYSIS; QUESTIONNAIRE; RISK ASSESSMENT; THEMATIC ANALYSIS;

ADAPTATION, PSYCHOLOGICAL; ADULT; BREAST NEOPLASMS; DECISION MAKING; DEFENSE MECHANISMS; FEMALE; GENETIC COUNSELING; GENETIC PREDISPOSITION TO DISEASE; GENETIC SCREENING; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; MASS SCREENING; MIDDLE AGED; OVARIAN NEOPLASMS; PAMPHLETS; PERSONALITY INVENTORY; QUESTIONNAIRES; RISK ASSESSMENT; WALES;

EID: 34548157039     PISSN: 10597700     EISSN: 15733599     Source Type: Journal    
DOI: 10.1007/s10897-007-9086-3     Document Type: Article

References (50)

1. Appleton, S., Fry, A., Rees, G., Rush, R., & Cull, A. (2000). Psychosocial effects of living with an increased risk of breast cancer: an exploratory study using telephone focus groups. Psychooncology, 9, 511-521.
2. Bennett, P., Phelps, C., Brain, K. Hood, K., & Gray, J. (in press). A randomised controlled trial of a brief self-help coping intervention designed to reduce distress when awaiting genetic risk information. J Psychosom Res
3. Berkenstadt, M., Shiloh, S., Barkai, G., Bat-Miriam Katznelson, M., & Goldman, B. (1999). Perceived personal control (PPC): A new concept in measuring outcome of genetic counseling. Am J Med Genet, 82, 53-59.
4. Bish, A., Sutton, S., Jacobs, C., Levene, S., Ramirez, A., & Hodgson, S. (2002). Changes in psychological distress after cancer genetic counseling: a comparison of affected and unaffected women. Br J Cancer, 86(1), 43-50.
5. Bonadona, V., Saltel, P., Desseigne, F., Mignotte, H., Saurin, J.-C., Wang, Q., et al. (2002). Cancer patients who experienced diagnostic testing for cancer susceptibility: reactions and behavior after the disclosure of a positive test result. Cancer Epidemiol Biomarkers Prev, 11, 97-104.
6. Bottorff, J. L., Balneaves, L. G., Buxton, J., Ratner, P. A., McCullum, M., Chalmers, K., et al. (2000). Falling through the cracks: women's experiences of ineligibility for genetic testing for risk of breast cancer. Can Fam Physician, 46, 1449-1456.
7. Brain, K., Gray, J., Norman P., France, E., Anglim, C., et al. (2000). Randomized trial of a specialist genetic assessment service for familial breast cancer. J Natl Cancer Inst, 92, 1345-1351.
8. Brain, K., Norman, P., Gray, J., Mansel, R., Rogers, C., & Harper, P. (2002). A randomized trial of specialist genetic assessment: psychological impact on women at different levels of familial breast cancer risk. Br J Cancer, 86(2), 233-238.
9. Braithwaite, D., Emery, H., Walter, F., Prevost, A., & Sutton, S. (2004). Psychological impact of genetic counseling for familial cancer: a systematic review and meta-analysis. J Natl Cancer Inst, 96(2), 122-133.
10. Broadstock, M., Michie, S., & Marteau, T. M. (2000). The psychological consequences of predictive genetic testing: a systematic review. Eur J Hum Genet, 8, 731-738.
11. Calman, K., & Hine, D. (1995). A policy framework for commissioning cancer services. London: Department of Health.
12. Codori, A., Peterson, G. M., Miglioretti, D. L., Larkin, E. K., Bushey, M. T., Young, C., et al. (1999). Attitudes towards colon cancer gene testing: factors predicting test uptake. Cancer Epidemiol Biomarkers Prev, 8, 345-351.
13. Collins, V., Halliday, J., Warren, R., & Williamson, R. (2000). Assessment of education and counseling offered by a familial colorectal cancer clinic. Clin Genet, 57, 48-55.
14. Cull, A., Anderson, E., Campbell, S., Mackay, J., Smythe, E., & Steel, M. (1999). The impact of genetic counseling about breast cancer risk on women's risk perceptions and levels of distress. Br J Cancer, 79(3-4), 501-508.
15. Dorval, M., Patenaude, A. F., Schneider, K. A., Kieffer, S. A., DiGianni, L., Kalkbrenner, K., et al. (2000). Anticipated versus actual emotional reactions to disclosure of results of genetic tests for cancer susceptibility: findings from p53 and BRCA1 testing programs. J Clin Oncol, 18(10), 2135-2142.
16. Foster, C., Eeles, R., Ardern-Jones, A., Moynihan, C., & Watson, M. (2004). Juggling roles and expectations: dilemmas faced by women talking to relatives about cancer and genetic testing. Psychol Health, 19(4), 439-455.
17. Fraser, L., Bramald, S., Chapman, C., Chu, C., Cornelius, V., Douglas, F., et al. (2003). What motivates interest in attending a familial cancer genetics clinic? Fam Cancer, 2(3-4), 159-168.
18. Fry, A., Cull, A., Appleton, S., Rush, R., Holloway, S., Gorman, D., et al. (2003). A randomised controlled trial of breast cancer genetics services in South East Scotland: psychological impact. Br J Cancer, 89, 653-659.
19. Geer, K. P., Ropka, M. E., Cohn, W. F., Jones, S. M., & Miesfeldt, S. (2001). Factors influencing patients' decisions to decline cancer genetics counseling services. J Genet Couns, 10(1), 25-40.
20. Green, J., Richards, M., Murton, F., Statham, H., & Hallowell, N. (1997). Family communication and genetic counseling: the case of hereditary breast and ovarian cancer. J Genet Couns, 6(1), 45-60.
21. Green, J., & Thorogood, N. (2004). Qualitative methods for health research. London: Sage.
22. Hallowell, N. (1999). Doing the right thing: genetic risk and responsibility. Sociol Health Illn, 21(5), 597-621.
23. Hallowell, N., Murton, F., Statham, H., Green, J., & Richards, M. (1997). Women's need for information before attending genetic counseling for familial breast or ovarian cancer: a questionnaire, interview, and observational study. Brit Med J, 314, 281.
24. Harper, P. S. (1997). Presymptomatic testing for late-onset genetic disorders: Lessons from Huntington's disease. In P. S. Harper & A. J. Clarke (Eds.), Genetics, society and clinical practice. Oxford: BIOS Scientific Publishers.
25. Harper, P. (1998). Genetics and cancer services. London: Department of Health.
26. Henderson, B. J., & Maguire, B. T. (1998). Lay representations of genetic disease and predictive testing. J Health Psychol, 3(2), 233-241.
27. Holloway, S., Porteous, M., Cetnarskyj, R., Anderson, E., Rush, R., et al. (2004). Patient satisfaction with two different models of cancer genetic services in south-east Scotland. Br J Cancer, 90, 582-589.
28. Horowitz, M. J., Wilner, N., & Alvarez, W. (1979). Impact of Event Scale: a measure of subjective stress. Psychosom Med, 1(3), 209-218.
29. Huiart, L., Eisinger, F., Stoppa-Lyonnet, D., Nogues, C., Vennin, P., et al. (2002). Effects of genetic consultation on perception of a family of breast/ovarian cancer and determinants of inaccurate perception after the consultation. J Clin Epid, 55(7), 665-675.
30. Iredale, R., Brain, K., Edwards, L., Gray, J., & France, E. (2003). The information and support needs of women at high risk of familial breast and ovarian cancer: how can cancer genetic services give patients what they want? Fam Cancer, 2, 119-121.
31. Kent, G., Howie, H., Fletcher, F., Newbury-Ecob, R., & Hosie, K. (2000). The relationship between perceived risk, thought intrusiveness and emotional well-being in women receiving counseling for breast cancer risk in a family historic clinic. Br J Health Psychol, 5, 15-26.
32. Leggatt, V., Mackay, J., Marteau, T. M., & Yates, J. R. W. (2000). The psychological impact of a cancer family history questionnaire completed in general practice. J Med Genet, 37, 470-472.
33. Lynch, H. T., Lemon, S. J., Durham, C., & Tinley, S. T. (1997). A descriptive study of BRCA1 testing and reactions to disclosure of test results. Cancer, 79(11), 2219-2228.
34. Marks, D., & Yardley, L. (2004). Research methods for clinical and health psychology. London: Sage.
35. McAllister, M., et al. (2002). Management of women with a family history of breast cancer in the North West Region of England: training for implementing a vision of the future. J Med Genet, 39, 531-535.
36. McIntosh, A., Shaw, C., Evans, G., Turnbull, N., Barclay, M., Easton, D., et al (2004). Clinical guidelines and evidence review for the classification and care of women at risk of familial breast cancer. London: National Collaborating Centre for Primary Care/University of Sheffield.
37. Meiser, B., & Halliday, J. L. (2002). What is the impact of genetic counseling in women at increased risk of developing hereditary breast cancer? A meta-analytic review. Soc Sci Med, 54, 1463-1470.
38. Michie, S., McDonald, V., & Marteau, T. (1996). Understanding responses to predictive genetic testing: a grounded theory approach. Psychol Health, 11, 455-470.
39. Pasacreta, J. V. (1999). Psychosocial issues associated with increased breast and ovarian cancer risk: findings from focus groups. Arch Psychiatr Nurs, 13(3), 127-136.
40. Phelps, C., Bennett, P., Iredale, R. Anstey, S., & Gray, J. (2005). The development of a distraction-based coping intervention for women waiting for genetic risk information: a phase 1 qualitative study. Psychooncology, 15, 169-173.
41. Phelps, C., Platt, K., France, L., Gray, J., & Iredale, R. (2004). Delivering information about cancer genetics via letter to patients at low and moderate risk of familial cancer: a pilot study in Wales. Fam Cancer, 3, 55-59.
42. Pill, R., Wood, F. C., Renold, E., Robling, M., Edwards, A., & Wilkinson C., for the Bridge Study Group. (2003). Welsh women's comments about breast problems and the care given: a qualitative study in the community. Eur J Cancer Care, 12, 240-248.
43. Ritvo, P., Robinson, G., Irvine, J., Brown, L., Murphy, J., Stewart, D. S., et al. (1999). A longitudinal study of psychological adjustment to familial genetic risk assessment for ovarian cancer. Gynecol Oncol, 74, 331-337.
44. Scott, S., Prior, L., Wood, F., & Gray, J. (2005). Repositioning the Patient: the implications of being 'at risk'. Soc Sci Med, 60(8), 1869-1879.
45. Silverman, D. (1993). Qualitative data analysis: interpreting talk, text and interaction. London: Sage.
46. Skirton, H. (2001). The client's perspective of genetic counseling-a grounded theory study. J Genet Couns, 10(4), 311-329.
47. Thewes, B., Meiser, B., Tucker, M., & Tucker, K. (2003). The unmet information and support needs of women with a family history of breast cancer: a descriptive survey. J Genet Couns, 12(1), 61-76.
48. Vernon, S. W., Gritz, E. R., Peterson, G. M., Perz, C. A., Marani, S., Amos, C., et al. (1999). Intention to learn results of genetic testing for hereditary colon cancer. Cancer Epidemiol Biomarkers Prev, 8, 353-360.
49. Watson, M., Duvivier, V., Wade Walsh, M., Ashley, S., Davidson, J., Papaikonomou, M., et al. (1998). Family history of breast cancer: what do women understand and recall about their genetic risk? J Med Genet, 35, 731-738.
50. Wonderling, D., Hopwood, P., Cull, A., Douglas, F., Watson, M., Burn, J., et al. (2001). A descriptive study of UK cancer genetics services: an emerging clinical response to the new genetics. Br J Cancer, 85(2), 166-170.