Opening the psychological black box in genetic counseling. The psychological impact of DNA testing is predicted by the counselees' perception, the medical impact by the pathogenic or uninformative BRCA1/2-result

Psycho-Oncology

Volumn 21, Issue 1, 2012, Pages 29-42

  Vos, Joël ^a   Gómez García, Encarna ^b   Oosterwijk, Jan C ^c   Menko, Fred H ^d   Stoel, Reinoud D ^e   Van Asperen, Christi J ^a   Jansen, Anna M ^a   Stiggelbout, Anne M ^a   Tibben, Aad ^a,f  

^a LEIDEN UNIVERSITY MEDICAL CENTER   (Netherlands)

^b MAASTRICHT UNIVERSITY MEDICAL CENTER   (Netherlands)

^c UNIVERSITY MEDICAL CENTER GRONINGEN   (Netherlands)

^d VU UNIVERSITY MEDICAL CENTER   (Netherlands)

^e NETHERLANDS FORENSIC INSTITUTE   (Netherlands)

^f ERASMUS MEDICAL CENTER   (Netherlands)

Author keywords

BRCA1 2; cancer; genetic counselling; oncology; psychology; risk perception

Indexed keywords

BRCA1 ASSOCIATED RING DOMAIN PROTEIN 1; BRCA2 PROTEIN;

ADULT; ARTICLE; BREAST CANCER; CANCER RISK; DNA TESTING; FAMILIAL CANCER; FEMALE; GENE MUTATION; GENETIC COUNSELING; GENETIC SCREENING; HUMAN; MAJOR CLINICAL STUDY; MEDICAL DECISION MAKING; OVARY CANCER; PROFESSIONAL KNOWLEDGE; PSYCHOLOGICAL ASPECT; QUANTITATIVE ANALYSIS; QUESTIONNAIRE; RETROSPECTIVE STUDY;

ADULT; AGED; BREAST NEOPLASMS; COMMUNICATION; DECISION MAKING; FEMALE; GENES, BRCA1; GENES, BRCA2; GENETIC COUNSELING; GENETIC PREDISPOSITION TO DISEASE; GENETIC TESTING; HUMANS; MENTAL RECALL; MIDDLE AGED; NETHERLANDS; PERCEPTION; QUALITY OF LIFE; QUESTIONNAIRES; RETROSPECTIVE STUDIES; RISK;

EID: 84855399483     PISSN: 10579249     EISSN: 10991611     Source Type: Journal    
DOI: 10.1002/pon.1864     Document Type: Article

References (65)

1. Vos J, Oosterwijk JC, Gomez-Garcia EB, et al,. Perceiving cancer-risks and heredity-likelihood in genetic-counseling: the analysis of the counselees' recollections and interpretations of BRCA1/2-test results. Clin Genet, in press.
2. Vos J, Otten W, van Asperen C, Jansen A, Menko F, Tibben A,. The counsellees' view of an unclassified variant in BRCA1/2: recall, interpretation, and impact on life. Psycho-Oncology 2008; 17 (8): 822-830.
3. Meiser B,. Psychological impact of genetic testing for cancer susceptibility: an update of the literature. Psycho-Oncology 2005; 14 (12): 1060-1074. (Pubitemid 43019695)
4. Butow PN, Lobb EA, Meiser B, Barratt A, Tucker KM,. Psychological outcomes and risk perception after genetic testing and counselling in breast cancer: a systematic review. Med J Aust 2003; 178 (2): 77-81. (Pubitemid 36187626)
5. Broadstock M, Michie S, Marteau T,. Psychological consequences of predictive genetic testing: a systematic review. Eur J Hum Genet 2000; 8 (10): 731-738.
6. Katapodi MC, Lee KA, Facione NC, Dodd MJ,. Predictors of perceived breast cancer risk and the relation between perceived risk and breast cancer screening: a meta-analytic review. Preventive Medicine 2004; 38 (4): 388-402. (Pubitemid 38327011)
7. Sivell S, Elwyn G, Gaff CL, Clark AJ, Iredale R, Shaw C, et al,. How risk is perceived, constructed and interpreted by clients in clinical genetics, and the effects on decision making: systematic review. J Genet Counsel 2008; 17: 30-63. (Pubitemid 351230515)
8. Bowen DJ, Christensen CL, Powers D, Graves DR, Anderson CAM,. Effects of counseling and ethnic identity on perceived risk and cancer worry in African American women. J Clin Psychol Med Settings 1998; 5 (3): 365-379. (Pubitemid 128513887)
9. Kent G, Howie H, Fletcher M, Newbury-Ecob R, Hosie K,. The relationship between perceived risk, thought intrusiveness and emotional well-being in women receiving counselling for breast cancer risk in a family history clinic. Br J Health Psychol 2000; 5: 15-26. (Pubitemid 30088782)
10. Schwartz MD, Peshkin BN, Hughes C, Main D, Isaacs C, Lerman C,. Impact of BRCA1/BRCA2 mutation testing on psychologic distress in a clinic-based sample. J Clin Oncol 2002; 20 (2): 514-520. (Pubitemid 34072536)
11. Watson M, Lloyd S, Davidson J, et al,. The impact of genetic counselling on risk perception and mental health in women with a family history of breast cancer. Br J Cancer 1999; 79 (5-6): 868-874. (Pubitemid 29082119)
12. van Dijk S, Otten W, Timmermans DRM, et al,. What's the message? Interpretation of an uninformative BRCA1/2 test result for women at risk of familial breast cancer. Genet Med 2005; 7 (4): 239-245. (Pubitemid 40638069)
13. Esplen MJ, Stuckless N, Hunter J, et al,. The BRCA self-concept scale: a new instrument to measure self-concept in BRCA1/2 mutation carriers. Psycho-Oncology 2009, DOI: 10.1002/pon.1498.
14. Horowitz M, Wilner N, Alvarez W,. Impact of event scale - measure of subjective stress. Psychosom Med 1979; 41 (3): 209-218. (Pubitemid 9219271)
15. De Haes JCJM, Van Knippenberg FCE, Neijt JP,. Measuring psychological and physical distress in cancer patients: structure and application of the Rotterdam symptom checklist. Br J Cancer 1990; 62 (6): 1034-1038.
16. Baron RM, Kenny DA,. The moderator mediator variable distinction in social psychological-research - conceptual, strategic, and statistical considerations. J Pers Soc Psychol 1986; 51 (6): 1173-1182.
17. Preacher KJ, Hayes AF,. Asymptotic and resampling strategies for assessing and comparing indirect effects in multiple mediator models. Behav Res Methods 2008; 40 (3): 879-889.
18. MacKinnon DP,. Introduction to Statistical Mediation Analyses. Lawrence Erlbaum Associates, Taylor & Francis Group, London; 2008.
19. Fritz MS, MacKinnon DP,. Required sample size to detect the mediated effect. Psychol Sci 2007; 18 (3): 233-239.
20. Shiloh S,. Illness representations, self-regulation, and genetic counseling: a theoretical review. J Genet Couns 2006; 15 (5): 325-337. (Pubitemid 44563995)
21. Marteau TM, Weinman J,. Self-regulation and the behavioural response to DNA risk information: a theoretical analysis and framework for future research. Soc Sci Med 2006; 62 (6): 1360-1368. (Pubitemid 43204245)
22. Cameron LD, Leventhal H, (eds). The self-regulation of Health and Illness Behaviour, Routledge: London and New York, 2003.
23. Decruyenaere M, Evers-Kiebooms G, Denayer L, et al,. Predictive testing for hereditary breast and ovarian cancer: a psychological framework for pre-test counselling. Eur J Hum Genet 2000; 8 (2): 130-136. (Pubitemid 30168893)
24. Leventhal H, Meyer D, Nerenz D,. The common sense representation of illness danger. In Contributions to Medical Psychology (2nd edn), Rachman S, (ed.). Pergamon Press: New York, 1980; 7-30.
25. Leventhal H, Weinman J, Leventhal EA, Phillips LA,. Health psychology: the search for pathways between behavior and health. Annu Rev Psychol 2008; 59: 477-505.
26. Kelly K, Leventhal H, Andrykowski M, et al,. Using the common sense model to understand perceived cancer risk in individuals testing for BRCA1/2 mutations. Psycho-Oncology 2005; 14 (1): 34-48. (Pubitemid 40124672)
27. Diefenbach MA, Leventhal H,. The common-sense model of illness representation: theoretical and practical considerations. J Soc Distress Homeless 1996; 5 (1): 11-38.
28. Shiloh S, Drori E, Orr-Urtregger A,. Being 'at-risk' for developing cancer: cognitive representations and psychological outcomes. J Behav Med 2009; 32: 197-208.
29. van Oostrom I, Meijers-Heijboer EJ, Duivenvoorden H, et al,. The common sense model of self-regulation and psychological adjustment to genetic cancer susceptibility testing: a prospective study. Psycho-Oncology 2007; 16 (12): 1121-1129. (Pubitemid 350302534)
30. Hallowell N, Foster C, Ardern-Jones A, Eeles R, Murday V, Watson M,. Genetic testing for women previously diagnosed with breast/ovarian cancer: examining the impact of BRCA1 and BRCA2 mutation searching. Genet Test 2002; 6 (2): 79-87.
31. Dorval M, Gauthier G, Maunsell E, et al,. No evidence of false reassurance among women with an inconclusive BRCA1/2 genetic test result. Cancer Epidemiol Biomarkers Prev 2005; 14 (12): 2862-2867. (Pubitemid 43068816)
32. Smerecnik CMR, Mesters I, Verweij E, De Vries NK, de Vries H,. A systematic review of the impact of genetic counseling on risk perception accuracy. J Genet Counsel 2009; 18 (3): 217-228.
33. Fischhoff B,. Why (Cancer) Risk Communication Can be Hard (25th edn). 1999, 7-13.
34. Woloshin S, Schwartz LM, Moncur M, Gabriel S, Tosteson ANA,. Assessing values for health: numeracy matters. Med Decis Making 2001; 21: 380-388.
35. Sheridan SL, Pignone M,. Numeracy and the medical student's ability to interpret data. Eff Clin Pract 2002; 5: 35-40.
36. Brewer NT, Tzeng JP, Lillie SE, Edwards AS, Peppercorn JM, Rimer BK,. Health literacy and cancer risk perception: implications for genomic risk communication. Med Decis Making 2009; 29: 157-166.
37. Press NA, Yasui Y, Reynolds S, Durfy SJ, Burke W,. Women's interest in genetic testing for breast cancer susceptibility may be based on unrealistic expectations. Am J Med Genet 2001; 99 (2): 99-110. (Pubitemid 32204778)
38. Frost C, Venne V, Cunningham D, Gerritsen-McKane R,. Decision making with uncertain information: learning from women in a high risk breast cancer clinic. J Genet Couns 2004; 13 (3): 221-236. (Pubitemid 39012928)
39. Klein WMP, Stefanek ME,. Cancer risk elicitation and communication: lessons from the psychology of risk perception. CA Cancer J Clin 2007; 57: 147-167. (Pubitemid 46798624)
40. Kahneman D,. A perspective on judgment and choice: mapping bounded rationality. Am Psychol 2003; 58 (9): 697-720. (Pubitemid 37340820)
41. Weinstein ND,. Unrealistic optimism about susceptibility to health problems: conclusions from a community-wide sample. J Behav Med 1987; 10 (5): 481-500. (Pubitemid 18019030)
42. Norem JK, Cantor N,. Defensive pessimism: harnessing anxiety as motivation. J Pers Soc Psychol 1986; 51 (6): 1208-1217.
43. Walter FM, Emery J, Braithwaite D, Marteau TM,. Lay understanding of familial risk of common chronic diseases: a systematic review and synthesis of qualitative research. Ann Fam Med 2004; 2 (6): 583-594. (Pubitemid 39643434)
44. Ponder M, Green JM,. BRCA1 testing: some issues in moving from research to service. Psycho-Oncology 1996; 5 (3): 223-232.
45. Emery J, Kumar S, Smith H,. Patient understanding of genetic principles and their expectations of genetic services within the nhs: a qualitative study. Community Genet 1998; 1: 78-83.
46. Peters JA, Biesecker BB,. Genetic counseling and hereditary cancer. Cancer 1997; 80 (3): 576-586. (Pubitemid 27329549)
47. Shiloh S, Rashuk-Rosenthal D, Benyamini Y,. Illness causal attributions: an exploratory study of their structure and associations with other illness cognitions and perceptions of control. J Behav Med 2002; 25 (4): 373-394. (Pubitemid 37486631)
48. Hopwood P,. Genetic risk counselling for breast cancer families. Eur J Cancer 1998; 34 (10): 1477-1479. (Pubitemid 28446325)
49. Loewenstein GF, Weber EU, Hsee CK, Welch N,. Risk as feelings. Psychol Bull 2001; 127 (2): 267-286. (Pubitemid 33696171)
50. Slovic P, Finucane ML, Peters E, MacGregor DG,. Risk as analysis and risk as feelings: some thoughts about affect, reason, risk, and rationality. Risk Anal 2004; 24 (2): 311-322. (Pubitemid 38620129)
51. Craddock Lee SJ,. Uncertain futures: individual risk and social context in decision-making in cancer screening. Health, Risk & Society 2010; 12 (2): 101-117.
52. Kavanagh AM, Broom DH,. Embodied risk: My body, myself? Soc Sci Med 1998; 46 (3): 437-444. (Pubitemid 28022407)
53. Langford IH,. An existential approach to risk perception. Risk Anal 2002; 22 (1): 101-120. (Pubitemid 34258738)
54. Skirton H,. The client's perspective of genetic counseling - A grounded theory study. J Genet Counsel 2001; 10 (4): 311-329. (Pubitemid 33818212)
55. Brug J, Steenhuis I, vanAssema P, deVries H,. The impact of a computer-tailored nutrition intervention. Prev Med 1996; 25 (3): 236-242. (Pubitemid 26177565)
56. Campbell MK, DeVellis BM, Strecher VJ, Ammerman AS, Devellis RF, Sandler RS,. Improving dietary behavior - the effectiveness of tailored messages in primary-care settings. Am J Public Health 1994; 84 (5): 783-787. (Pubitemid 24237357)
57. Pieterse AH, van Dulmen S, van Dijk S, Bensing JM, Ausems MGEM,. Risk communication in completed series of breast cancer genetic counseling visits. Genet Med 2006; 8 (11): 688-696. (Pubitemid 44772796)
58. Roter D,. The enduring and evolving nature of the patient-physician relationship. Patient Educ Couns 2000; 39 (1): 5-15.
59. Stewart M, Brown JB, Donner A, et al,. The impact of patient-centered care on outcomes. J Fam Pract 2000; 49 (9): 796-804.
60. Stam P, Van der Looiu E, Voorendt M, Van der Burgt I, Hoogerbrugge N,. Overestimated Lifetime Cancer Risk Can Be Reduced by Feedback on Preexisting Estimation (EP03.03) (18th edn). 2010.
61. Kenen RH,. The at-risk health status and technology: a diagnostic invitation and the 'gift' of knowing. Soc Sci Med 1996; 42 (11): 1545-1553. (Pubitemid 26161405)
62. Zigmond AS, Snaith RP,. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983; 67 (6): 361-370. (Pubitemid 13098606)
63. Kasparian NA, Wakefield CE, Meiser B,. Assessment of psychosocial outomces in genetic counseling research: an overview of avalaible measurement scales. J Genet Counsel 2007; 16 (693): 712.
64. Spinhoven P,. A validation study of the hospital anxiety and depression scale (HADS) in different groups of Dutch subjects. Psychol Med 1997; 27 (2): 363-370. (Pubitemid 27139969)
65. Lerman C, Trock B, Rimer BK, Jepson C, Brody D, Boyce A,. Psychological side-effects of breast-cancer screening. Health Psychol 1991; 10 (4): 259-267.