Family communication matters: The impact of telling relatives about unclassified variants and uninformative DNA-test results

Genetics in Medicine

Volumn 13, Issue 4, 2011, Pages 333-341

  Vos, Joël ^a,c   Jansen, Anna M ^a   Menko, Fred ^b   Van Asperen, Christi J ^a   Stiggelbout, Anne M ^a   Tibben, Aad ^a,c  

^a LEIDEN UNIVERSITY MEDICAL CENTER   (Netherlands)

^b VU UNIVERSITY MEDICAL CENTER   (Netherlands)

^c ERASMUS MEDICAL CENTER   (Netherlands)

Author keywords

BRCA1 2; family therapy; genetic counseling; oncology; psychology

Indexed keywords

ARTICLE; BOOTSTRAPPING; BREAST EXAMINATION; CANCER RISK; DISTRESS SYNDROME; DNA DETERMINATION; FAMILY INTERACTION; FEMALE; GENETIC COUNSELING; HUMAN; INTERPERSONAL COMMUNICATION; LIFE EVENT; MALE; MEDICAL DECISION MAKING; OUTCOME ASSESSMENT; PERCEPTION; PERIODIC MEDICAL EXAMINATION; POPULATION RESEARCH; QUALITY OF LIFE; QUESTIONNAIRE; RELATIVE; SELF EXAMINATION;

COMMUNICATION; DISCLOSURE; DNA MUTATIONAL ANALYSIS; FAMILY; FAMILY HEALTH; FEMALE; GENETIC COUNSELING; GENETIC PREDISPOSITION TO DISEASE; GENETIC TESTING; HUMANS; QUESTIONNAIRES; RETROSPECTIVE STUDIES;

EID: 79955014997     PISSN: 10983600     EISSN: None     Source Type: Journal    
DOI: 10.1097/GIM.0b013e318204cfed     Document Type: Article

References (37)

1. van Oostrom I, MeijersHeijboer EJ, Duivenvoorden H, et al. A prospective study of the impact of genetic susceptibility testing for BRCA1/2 or HNPCC on family relationships. Psychooncology 2006;16:320-328.
2. van Oostrom I, Meijers-Heijboer EJ, Duivenvoorden H, et al. Family system characteristics and psychological adjustment to cancer susceptibility genetic testing: a prospective study. Clin Genet 2007;71:35-42. (Pubitemid 44929338)
3. Gaff CL, Clarke AJ, Atkinson P. Process and outcome in communication of genetic information within families: a systematic review (vol 15, pg 999, 2007). Eur J Hum Genet 2008;16:402.
4. Tercyak KP, Streisand R, Peshkin BN, Lerman C. Psychosocial impact of predictive testing for illness on children and families: challenges for a new millennium. J Clin Psychol Med Settings 2000;7:55-68.
5. Hughes C, Lerman C, Schwartz M, et al. All in the family: evaluation of the process and content of sisters' communication about BRCA1 and BRCA2 genetic test results. Am J Med Genet 2002;107:143-150. (Pubitemid 34038596)
6. Koehly LM, Peters JA, Kuhn N, et al. Sisters in hereditary breast and ovarian cancer families: communal coping, social integration, and psychological well-being. Psychooncology 2008;17:812-821.
7. Rolland JS. Cancer and the family: an integrative model. Cancer 2005;104: 2584-2595. (Pubitemid 41691541)
8. Douglas HA, Hamilton RJ, Grubs RE. The effect of BRCA gene testing on family relationships: a thematic analysis of qualitative interviews. J Genet Couns 2009;18:418-435.
9. Brown TC, Garber J, Muto M, Schneider KA. Case report-loyalty, legacy, and ledger: contextual therapy in a patient with a family history of ovarian cancer. J Genet Couns 1999;8:359-372. (Pubitemid 30035604)
10. Landsbergen K, Verhaak C, Kraaimaat F, Hoogerbrugge N. Genetic uptake in BRCA-mutation families is related to emotional and behavioral communication characteristics of index patients. Familial Cancer 2005;4:115-119. (Pubitemid 40897811)
11. Mellon S, Janisse J, Gold R, et al. Predictors of decision making in families at risk for inherited breast/ovarian cancer. Health Psychol 2009;28:38-47.
12. Vos J, Menko F, Jansen AM, van Asperen CJ, Stiggelbout AM, Tibben A. A whisper-game perspective on the family communication of DNA-test results: a retrospective study on the communication process of BRCA1/2-test results between proband and relatives. Fam Cancer 2011;10:87-96.
13. Vos J, Oosterwijk JC, Gómez-García E, et al. Perceiving cancer-risks and heredity-likelihood in genetic-counseling: how counselees recall and interpret BRCA1/2-test results. Clin Genet 2011;79:207-218.
14. Vos J, Gómez-García E, Oosterwijk JC, et al. Opening the psychological black box in genetic counseling. The psychological impact of DNA-testing is predicted by the counsellees' perception, the medical impact by the pathogenic or uninformative BRCA1/2-result [published online ahead of print November 11, 2010]. Psychooncology doi: 10.1002/pon.1864.
15. Mellon S, Berry-Bobovski L, Gold R, Levin N, Tainsky MA. Communication and decision-making about seeking inherited cancer risk information: findings from female survivor-relative focus groups. Psychooncology 2006; 15:193-208.
16. Hallowell N, Ardern-Jones A, Eeles R, et al. Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems. Clin Genet 2005;67:492-502. (Pubitemid 40637447)
17. Keenan LA, Lesniak KT, Guarnaccia CA, Althaus B, Ethington G, Blum JL. Family environments of women seeking BRCA1/BRCA2 genetic mutation testing: an exploratory analysis. J Genet Couns 2004;V13:157-176. (Pubitemid 39024179)
18. van Oostrom I, Meijers-Heijboer H, Duivenvoorden HJ, et al. Experience of parental cancer in childhood is a risk factor for psychological distress during genetic cancer susceptibility testing. Ann Oncol 2006;17:1090-1095. (Pubitemid 43985244)
19. Lerman C, Trock B, Rimer BK, Jepson C, Brody D, Boyce A. Psychological side-effects of breast-cancer screening. Health Psychol 1991;10:259-267.
20. Thewes B, Meiser B, Hickie IB. Psychometric properties of the impact of event scale amongst women at increased risk for hereditary breast cancer. Psychooncology 2001;10:459-468. (Pubitemid 33081032)
21. 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;62:1034-1038.
22. Hargrave T, Jennings G, Anderson W. The development of a relational ethics scale. J Marital Fam Ther 1991;17:145-148.
23. van Oostrom I, Meijers-Heijboer EJ, Duivenvoorden HJ, et al. Comparison of individuals opting for BRCA1/2 or HNPCC genetic susceptibility testing with regard to coping, illness perceptions, illness experiences, family system characteristics and hereditary cancer distress. Patient Educ Couns 2007;65:58-68. (Pubitemid 44820752)
24. Van Dijk S, Otten W, van Asperen CJ, et al. Feeling at risk: how women interpret their familial breast cancer risk. Am J Med Genet A 2004;131A: 42-49. (Pubitemid 39434793)
25. 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. Psychooncology 2008;17:822-830.
26. Preacher KJ, Hayes AF. Asymptotic and resampling strategies for assessing and comparing indirect effects in multiple mediator models. Behav Res Methods 2008;40:879-889.
27. Fritz MS, MacKinnon DP. Required sample size to detect the mediated effect. Psychol Sci 2007;18:233-239.
28. 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;2:583-594. (Pubitemid 39643434)
29. Ponder M, Green JM. BRCA1 testing: some issues in moving from research to service. Psychooncology 1996;5:223-232.
30. 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.
31. Peters JA, Biesecker BB. Genetic counseling and hereditary cancer. Cancer 1997;80:576-586. (Pubitemid 27329549)
32. Smith JA, Michie S, Allanson A, Elwy R. Certainty and uncertainty in genetic counselling: a qualitative case study. Psychol Health 2000;15:1-12.
33. Bylund C, Fisher C, Brashers D, Brown R, Edgerson S, Kissane D. Mothers' uncertainty about their daughters' breast cancer risk and prevention strategies (Abstract IPOS: A-509). Psychooncology 2010;19:141.
34. Geller G, Tambor ES, Chase GA, Holtzman NA. Measuring physicians tolerance for ambiguity and its relationship to their reported practices regarding genetic testing. Med Care 1993;31:989-1001.
35. Sarangi S. The language of likelihood in genetic-counseling discourse. J Lang Social Psychol 2002;21:7-31. (Pubitemid 36657026)
36. Costalas JW, Itzen M, Malick J, et al. Communication of BRCA1 and BRCA2 results to at-risk relatives: a cancer risk assessment program's experience. A J Med Genet C Semin Med Genet 2003;119C: 11-18. (Pubitemid 37064096)
37. Sermijn E, Goelen G, Teugels E, et al. The impact of proband mediated information dissemination in families with a BRCA1/2 gene mutation. J Med Genet 2004;41:e23.