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Familial Cancer
Published in: Familial Cancer 1/2011

Open Access 01-03-2011

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

Authors: Joël Vos, Fred Menko, Anna M. Jansen, Christi J. van Asperen, Anne M. Stiggelbout, Aad Tibben

Published in: Familial Cancer | Issue 1/2011

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Abstract

Objective of this paper is to study how DNA-test result information was communicated and perceived within families. A retrospective descriptive study in 13 probands with a BRCA1/2 unclassified variant, 7 with a pathogenic mutation, 5 with an uninformative result, and in 44, 14, and 12 of their 1st and 2nd degree relatives respectively. We examined differences and correlations between: (a) information actually communicated (b) probands’ perception, (c) relatives’ perception. The perception consisted of recollections and interpretations of both their own and their relatives’ cancer-risks, and heredity-likelihood (i.e. likelihood that cancer is heritable in the family). Differences and low correlations suggested few similarities between the actually communicated information, the probands’ and the relatives’ perception. More specifically, probands recalled the communicated information differently compared with the actually communicated information (R = .40), and reinterpreted this information differently (R = .30). The relatives’ perception was best correlated with the proband’s interpretation (R = .08), but this perception differed significantly from their proband’s perception. Finally, relatives reinterpreted the information they received from their proband differently (R = .25), and this interpretation was only slightly related with the original message communicated by the genetic-counsellor (R = .15). Unclassified-variants were most frequently misinterpreted by probands and relatives, and had the largest differences between probands’ and relatives’ perceptions. Like in a children’s whisper-game, many errors occur in the transmission of DNA-test result information in families. More attention is required for how probands disseminate information to relatives. Genetic-counsellors may help by supporting the probands in communicating to relatives, e.g. by providing clear summary letters for relatives.
Literature
1.
Brewer NT, Tzeng JP, Lillie SE, Edwards AS, Peppercorn JM, Rimer BK (2009) Health literacy and cancer risk perception: implications for genomic risk communication. Med Decis Making 29:157–166CrossRefPubMed
2.
Broadstock M, Michie S, Marteau T (2000) Psychological consequences of predictive genetic testing: a systematic review. Eur J Hum Genet 8(10):731–738CrossRefPubMed
3.
Brown TC, Garber J, Muto M, Schneider KA (1999) Case report—loyalty, legacy, and ledger: contextual therapy in a patient with a family history of ovarian cancer. J Genet Couns 8(6):359–372CrossRef
4.
Butow PN, Lobb EA, Meiser B, Barratt A, Tucker KM (2003) Psychological outcomes and risk perception after genetic testing and counselling in breast cancer: a systematic review. Med J Aust 178(2):77–81PubMed
5.
Claes E, Evers-Kiebooms G, Boogaerts A, Decruyenaere M, Denayer L, Legius E (2003) Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients. Am J Med Genet A 116A(1):11–19CrossRefPubMed
6.
Costalas JW, Itzen M, Malick J, Babb JS, Bove B, Godwin AK, Daly MB (2003) 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 119C(1):11–18CrossRef
7.
Daly MB, Barsevick A, Miller SM, Buckman R, Costalas J, Montgomery S, Bingler R (2001) Communicating genetic test results to the family: a six-step, skills-building strategy. Fam Community Health 24(3):13–26PubMed
8.
Douglas HA, Hamilton RJ, Grubs RE (2009) The effect of BRCA gene testing on family relationships: a thematic analysis of qualitative interviews. J Genet Couns 18(5):418–435CrossRefPubMed
9.
Sermijn E, Goelen G, Teugels E, Kaufman L, Bonduelle M, Neyns B, Poppe B, De Paepe A, de Greve J (2004) The impact of proband mediated information dissemination in families with a BRCA1/2 gene mutation. J Med Genet 41:23–26CrossRef
10.
Emery J, Kumar S, Smith H (1998) Patient understanding of genetic principles and their expectations of genetic services within the NHS: a qualitative study. Community Genet 1:78–83CrossRefPubMed
11.
Forrest K, Simpson SA, Wilson BJ, van Teijlingen ER, Mckee L, Haites N, Matthews E (2003) To tell or not to tell: barriers and facilitators in family communication about genetic risk. Clin Genet 64(4):317–326CrossRefPubMed
12.
Gaff CL, Clarke AJ, Atkinson P (2008) Process and outcome in communication of genetic information within families: a systematic review. Eur J Hum Genet 16(3):402CrossRef
13.
Godard B, Hurlimann T, Letendre M, Egalite N, Inherit BRCA (2006) Guidelines for disclosing genetic information to family members: from development to use. Fam Cancer 5(1):103–116CrossRefPubMed
14.
Hagger MS, Orbell S (2003) A meta-analytic review of the common-sense model of illness representations. Psychol Health 18(2):141–184CrossRef
15.
Hallowell N (1999) Doing the right thing: genetic risk and responsibility. Sociol Health Illn 21(5):597–621CrossRef
16.
Hallowell N, Foster C, Ardern-Jones A, Eeles R, Murday V, Watson M (2002) Genetic testing for women previously diagnosed with breast/ovarian cancer: examining the impact of BRCA1 and BRCA2 mutation searching. Genet Test 6(2):79–87CrossRefPubMed
17.
Hopwood P (1998) Genetic risk counselling for breast cancer families. Eur J Cancer 34(10):1477–1479CrossRefPubMed
18.
Hughes C, Lerman C, Schwartz M, Peshkin BN, Wenzel L, Narod S, Corio C, Tercyak KP, Hanna D, Isaacs C, Main D (2002) All in the family: evaluation of the process and content of sisters’ communication about BRCA1 and BRCA2 genetic test results. Am J Med Genet 107(2):143–150CrossRefPubMed
19.
Kahneman D (2003) A perspective on judgment and choice: mapping bounded rationality. Am Psychol 58(9):697–720CrossRefPubMed
20.
Kenen R, rdern-Jones A, Eeles R (2003) Family stories and the use of heuristics: women from suspected hereditary breast and ovarian cancer (HBOC) families. Sociol Health Illn 25(7):838–865CrossRefPubMed
21.
Kenen R, rdern-Jones A, Eeles R (2004) We are talking, but are they listening? Communication patterns in families with a history of breast/ovarian cancer (HBOC). Psycho-Oncology 13(5):335–345CrossRefPubMed
22.
Koehly LM, Peters JA, Kuhn N, Hoskins L, Letocha A, Kenen R, Loud J, Greene MH (2008) Sisters in hereditary breast and ovarian cancer families: communal coping, social integration, and psychological well-being. Psycho-Oncology 17(8):812–821CrossRefPubMed
23.
Koehly LM, Peterson SK, Watts BG, Kempf KKG, Vernon SW, Gritz ER (2003) A social network analysis of communication about hereditary nonpolyposis colorectal cancer genetic testing and family functioning. Cancer Epidemiol Biomarkers Prev 12(4):304–313PubMed
24.
Landsbergen K, Verhaak C, Kraaimaat F, Hoogerbrugge N (2005) Genetic uptake in BRCA-mutation families is related to emotional and behavioral communication characteristics of index patients. Fam Cancer 4(2):115–119CrossRefPubMed
25.
Lerman C, Croyle RT, Tercyak KP, Hamann H (2002) Genetic testing: psychological aspects and implications. J Consult Clin Psychol 70(3):784–797CrossRefPubMed
26.
Lewis C, Mehta P, Kent A, Skirton H, Coviello D (2007) An assessment of written patient information provided at the genetic clinic and relating to genetic testing in seven European countries. Eur J Hum Genet 15:1012–1022CrossRefPubMed
27.
28.
McCann S, MacAuley D, Barnett Y, Bunting B, Bradley A, Jeffers L, Morrison PJ (2009) Family communication, genetic testing and colonoscopy screening in hereditary non-polyposis colon cancer: a qualitative study. Psycho-Oncology 18(11):1208–1215CrossRefPubMed
29.
Meiser B (2005) Psychological impact of genetic testing for cancer susceptibility: an update of the literature. Psycho-Oncology 14(12):1060–1074CrossRefPubMed
30.
Meiser B, Halliday JL (2002) What is the impact of genetic counselling in women at increased risk of developing hereditary breast cancer? A meta-analytic review. Soc Sci Med 54(10):1463–1470CrossRefPubMed
31.
Mellon S, Berry-Bobovski L, Gold R, Levin N, Tainsky MA (2006) Communication and decision-making about seeking inherited cancer risk information: findings from female survivor-relative focus groups. Psycho-Oncology 15(3):193–208CrossRefPubMed
32.
Mellon S, Gold R, Janisse J, Cichon M, Tainsky MA, Simon MS, Korczak J (2008) Risk perception and cancer worries in families at increased risk of familial breast/ovarian cancer. Psycho-Oncology 17:756–766CrossRefPubMed
33.
Mellon S, Janisse J, Gold R, Cichon M, Berry-Bobovski L, Tainsky MA, Simon MS (2009) Predictors of decision making in families at risk for inherited breast/ovarian cancer. Health Psychol 28(1):38–47CrossRefPubMed
34.
Mellon S, Kershaw TS, Northouse LL, Freeman-Gibb L (2007) A family-based model to predict fear of recurrence for cancer survivors and their caregivers. Psycho-Oncology 16:214–223CrossRefPubMed
35.
Miller SM, McDaniel SH, Rolland JS, Feetham SL (2006) Individuals, families, and the new era of genetics. Biopsychosocial perspectives. W.W. Norton & Company, New York/London
36.
Northouse LL, Mood D, Kershaw T, Schafenacker A, Mellon S, Walker S, Galvin E, Decker V (2002) Quality of life of women with recurrent breast cancer and their family members. J Clin Oncol 20(19):4040–4064CrossRef
37.
Patenaude AF, Dorval M, DiGianni LS, Schneider KA, Chittenden A, Garber JE (2006) Sharing BRCA1/2 test results with first-degree relatives: factors predicting who women tell. J Clin Oncol 24(4):700–706CrossRefPubMed
38.
Peters JA, Biesecker BB (1997) Genetic counseling and hereditary cancer. Cancer 80(3):576–586CrossRef
39.
Ponder M, Green JM (1996) BRCA1 testing: some issues in moving from research to service. Psycho-Oncology 5(3):223–232CrossRef
40.
41.
Sheridan SL, Pignone M (2002) Numeracy and the medical student’s ability to interpret data. Eff Clin Pract 5:35–40PubMed
42.
Slovic P, Finucane ML, Peters E, MacGregor DG (2004) Risk as analysis and risk as feelings: some thoughts about affect, reason, risk, and rationality. Risk Anal 24(2):311–322CrossRefPubMed
43.
Smith KR, West JA, Croyle RT, Botkin JR (1999) Familial context of genetic testing for cancer susceptibility: moderating effect of siblings’ test results on psychological distress one to two weeks after BRCA1 mutation testing. Cancer Epidemiol Biomarkers Prev 8(4):385–392PubMed
44.
Tercyak KP, Hughes C, Main D, Snyder C, Lynch JF, Lynch HT, Lerman C (2001) Parental communication of BRCA1/2 genetic test results to children. Patient Educ Couns 42(3):213–224CrossRefPubMed
45.
Tercyak KP, Peshkin BN, DeMarco TA, Brogan BM, Lerman C (2002) Parent-child factors and their effect on communicating BRCA1/2 test results to children. Patient Educ Couns 47(2):145–153CrossRefPubMed
46.
Tercyak KP, Peshkin BN, Streisand R, Lerman C (2001) Psychological issues among children of hereditary breast cancer gene (BRCA1/2) testing participants. Psycho-Oncology 10(4):336–346CrossRefPubMed
47.
Tercyak KP, Streisand R, Peshkin BN, Lerman C (2000) Psychosocial impact of predictive testing for illness on children and families: challenges for a new millennium. J Clin Psychol Med Settings 7(1):55–68CrossRef
48.
van Asperen CJ, van Dijk S, Zoeteweij MW, Timmermans DRM, de Bock GH, Meijers-Heijboer EJ, Niermeijer MF, Breuning MH, Kievit J, Otten W (2002) What do women really want to know? Motives for attending familial breast cancer clinics. J Med Genet 39(6):410–414CrossRefPubMed
49.
Vink GR, van Asperen CJ, Devilee P, Breuning MH, Bakker E (2004) Unclassified variants in disease-causing genes: nonuniformity of genetic testing and counselling, a proposal for guidelines. Eur J Hum Genet 13:525–527CrossRef
50.
Vos J, Otten W, van Asperen C, Jansen A, Menko F, Tibben A (2008) The counsellees’ view of an unclassified variant in BRCA1/2: recall, interpretation, and impact on life. Psycho-Oncology 17(8):822–830CrossRefPubMed
51.
Vos J, Gomez-Garcia EB, Oosterwijk JC, Menko FH, Jansen AM, van Asperen CJ, Stiggelbout AM, Tibben A (2010a) Perceiving cancer-risks and heredity-likelihood in genetic-counseling: the analysis of the counselees’ recollections and interpretations of BRCA1/2-test results (submitted)
52.
Vos J, Gomez-Garcia EB, Oosterwijk JC, Menko FH, Stoel RD, van Asperen CJ, Jansen AM, Stiggelbout AM, Tibben A (2010b) 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. Psycho-Oncology (in press)
53.
Vos J, Jansen AM, Menko FH, van Asperen CJ, Stiggelbout AM, Tibben A (2010c) Family communication matters: the impact of telling relatives about non-pathogenic DNA-test results depends on the proband’s non-verbal communication and the relatives’ subjective perception (submitted)
54.
Vos J, Oosterwijk JC, Gomez-Garcia EB, Menko FH, van Asperen CJ, Stiggelbout AM, Tibben A (2010d) Explaining the short-term impact of DNA-testing: the counselees’ perception matters, the actual BRCA1/2-result does not (submitted)
55.
Walter FM, Emery J, Braithwaite D, Marteau TM (2004) Lay understanding of familial risk of common chronic diseases: a systematic review and synthesis of qualitative research. Ann Fam Med 2(6):583–594CrossRefPubMed
56.
Woloshin S, Schwartz LM, Moncur M, Gabriel S, Tosteson ANA (2001) Assessing values for health: numeracy matters. Med Decis Making 21:380–388CrossRef
Metadata
Title
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
Authors
Joël Vos
Fred Menko
Anna M. Jansen
Christi J. van Asperen
Anne M. Stiggelbout
Aad Tibben
Publication date
01-03-2011
Publisher
Springer Netherlands
Published in
Familial Cancer / Issue 1/2011
Print ISSN: 1389-9600
Electronic ISSN: 1573-7292
DOI
https://doi.org/10.1007/s10689-010-9385-y

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