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I have always believed I was at high risk…” The role of expectation in emotional responses to the receipt of an average, moderate or high cancer genetic risk assessment result: a thematic analysis of free-text questionnaire comments

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Abstract

It is well-recognised that receipt of cancer genetic risk information can evoke a mix of both positive and negative emotional responses. Objective risk itself is not necessarily predictive of emotional response to receipt of risk information and the Cue Adaptive Reasoning Account (CARA; Renner, 2004) suggests that that the degree to which level of risk is consistent with expectations may influence emotional responses. This paper reports a thematic analysis of the free-text data structured around responses to the three risk labels: average, moderate or high. Data is reported from both 123 women and 15 men, including those with a past or current cancer diagnosis. Reactions to risk information appear to be dependent upon participants’ pre-conceived expectations about their level of cancer risk. Many average risk respondents questioned the accuracy of their result, whereas high risk information was often expected. Findings are discussed in relation to the CARA model and clinical implications.

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References

  1. Meiser B (2005) Psychological impact of genetic testing for cancer susceptibility: an update of the literature. Psychooncology 14:1060–1074

    Article  PubMed  Google Scholar 

  2. Codori AM, Waldeck T, Petersen GM, Miglioretti D, Trimbath JD, Tillery MA (2005) Genetic counseling outcomes: perceived risk and distress after counseling for hereditary colorectal cancer. J Genet Couns 14:119–132

    Article  PubMed  Google Scholar 

  3. Bish A, Sutton S, Jacobs C, Levene S, Ramirez A, Hodgson S (2002) Changes in psychological distress after cancer genetic counselling: a comparison of affected and unaffected women. Br J Cancer 86:43–50

    Article  CAS  PubMed  Google Scholar 

  4. Schwartz MD, Rimer BK, Daly M, Sands C, Lerman C (1999) A randomized trial of breast cancer risk counselling: the impact on self-reported mammography use. Am J Public Health 89:924–926

    Article  CAS  PubMed  Google Scholar 

  5. Panzer M, Renner B (2008) To be or not to be at risk: spontaneous reactions to risk information. Psychol Health 23:617–627

    Article  Google Scholar 

  6. Renner B (2004) Biased reasoning: adaptive responses to health risk feedback. Pers Soc Psychol Bull 30:384–396

    Article  PubMed  Google Scholar 

  7. Edwards K, Smith EE (1996) A disconfirmation bias in the evaluation of arguments. J Pers Soc Psychol 71:5–24

    Article  Google Scholar 

  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 86:233–238

    Article  CAS  PubMed  Google Scholar 

  9. Bennett P, Wilkinson C, Turner J, Tudor Edwards R, France B, Griffin G, Gray J (2008) Factors associated with intrusive cancer-related worries in women undergoing cancer genetic risk assessment. Fam Cancer 8:159–165

    Article  PubMed  Google Scholar 

  10. Cull A, Anderson ED, Campbell S, Mackay J, Smyth E, Steel M (1999) The impact of genetic counselling about breast cancer risk on women’s risk perceptions and levels of distress. Br J Cancer 79:501–508

    Article  CAS  PubMed  Google Scholar 

  11. Metcalfe A, Werrett J, Burgess L, Chapman C, Clifford C (2009) Cancer genetic predisposition: information needs of patients irrespective of risk level. Fam Cancer (in press). doi: 10.1007/s10689-009-9256-6

  12. Phelps C, Wood F, Bennett P, Brain K, Gray J (2007) Knowledge and expectations of women undergoing cancer genetic risk assessment: a qualitative analysis of free-text comments. J Genet Couns 16:505–514

    Article  CAS  PubMed  Google Scholar 

  13. Horowitz M, Willner N, Alvarez W (1979) Impact of Event Scale: a measure of subjective stress. Psychosom Med 41:209–218

    CAS  PubMed  Google Scholar 

  14. Marks D, Yardley L (2004) Research methods for clinical and health psychology. Sage, London

    Google Scholar 

  15. 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

    Article  Google Scholar 

  16. Scott S, Prior L, Wood F, Gray J (2005) Repositioning the patient: the implications of being ‘at risk’. Soc Sci Med 60:1869–1879

    Article  CAS  PubMed  Google Scholar 

  17. Hopwood P, Shenton A, Lalloo F, Evans DGR, Howell A (2001) Risk perception and cancer worry: an exploratory study of the impact of genetic risk counselling in women with a family history of breast cancer. J Med Genet 38:139

    Article  CAS  PubMed  Google Scholar 

  18. Walter F, Emery J (2005) ‘Coming down the line’—Patients’ understanding of their family history of common chronic disease. Ann Fam Med 3:405–414

    Article  PubMed  Google Scholar 

  19. Weinstein N, Atwood K, Puleo E, Fletcher R, Colditz G, Emmons K (2004) Colon cancer: risk perceptions and risk communications. J Health Commun 9:53–65

    Article  PubMed  Google Scholar 

  20. Young D, McLeish L, Sullivan F, Pitkethly M, Reis M, Goudie D et al (2006) Familial breast cancer: management of ‘lower risk’ referrals. Br J Cancer 95:974–978

    Article  CAS  PubMed  Google Scholar 

  21. Hallowell N, Statham H, Murton F (1998) Women’s understanding of their risk of developing breast/ovarian cancer before and after genetic counselling. J Genet Couns 7:345–364

    Article  Google Scholar 

  22. Michie S, Smith J, Senior V, Marteau M (2003) Understanding why genetic test results fail to reassure. Am J Med Genet 119A:340–347

    Article  PubMed  Google Scholar 

  23. Parsons E, Beale V, Bennett H, Jones J, Lycett E (2000) Reassurance through surveillance in the face of clinical uncertainty: the experience of women at risk of familial breast cancer. Health Expect 3:263–273

    Article  PubMed  Google Scholar 

  24. Esplen MJ, Madlensky L, Aronson M et al (2007) Colorectal cancer survivors undergoing genetic testing for hereditary non-polyposis colorectal cancer: motivational factors and psychosocial functioning. Clin Genet 72:394–401

    Article  CAS  PubMed  Google Scholar 

  25. Foster C, Watson M, Moynihan C, Arden-Jones A, Eeles R (2002) Genetic testing for breast and ovarian cancer predisposition: cancer burden and responsibility. J Health Psychol 7:469–484

    Article  Google Scholar 

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Acknowledgments

The CARIAD Trial was funded by the Wales Office for Research & Development (WORD). All study procedures were approved by the Multi-centre Research Ethics Committee for Wales. We thank all the patients who took part in this study through the Cancer Genetics Service for Wales.

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Correspondence to J. Hilgart.

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Hilgart, J., Phelps, C., Bennett, P. et al.I have always believed I was at high risk…” The role of expectation in emotional responses to the receipt of an average, moderate or high cancer genetic risk assessment result: a thematic analysis of free-text questionnaire comments. Familial Cancer 9, 469–477 (2010). https://doi.org/10.1007/s10689-010-9324-y

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