Familial Cancer

, Volume 12, Issue 4, pp 601–610 | Cite as

Is the psychological impact of genetic testing moderated by support and sharing of test results to family and friends?

  • Julie Lapointe
  • Michel Dorval
  • Catherine Noguès
  • Roxane Fabre
  • GENEPSO Cohort
  • Claire Julian-Reynier
Original Article

Abstract

Receiving the results of genetic tests for a breast and ovarian cancer susceptibility can be a stressful experience. Here we studied the effects of social support (SS) and the sharing of test results on the psychological impact of BRCA1/2 test result disclosure. We also compared carriers and non-carriers on sharing, SS and psychological impact. Five-hundred and twenty-two unaffected women were followed prospectively for 2 years after receiving their test results. Psychological impact was measured on the impact of event scale. Multivariate multi-level models were used, and all the analyses were stratified depending on mutation status (carriers vs non-carriers). Two weeks after receiving their BRCA1/2 results, carriers had shared their test results less frequently than non-carriers (p < 0.01). Sharing test results was not significantly associated with psychological impact. Availability of SS was significantly associated with better psychological adjustment across time among carriers (p < 0.01), but not among non-carriers. For female BRCA1/2 mutation carriers, the importance of SS should be stressed, and possible ways of enlisting people in their entourage for this purpose should be discussed in the context of clinical encounters.

Keywords

Breast and ovarian cancer Family communication Hereditary cancer Psychological distress Social support 

Notes

Acknowledgments

Julie Lapointe is a CIHR Fellow in Psychosocial Oncology Research and Training (PORT), was funded through a CIHR Training Grant (No. TGF-63285), a Michael Smith Foreign Study Supplements—Canada Graduate Scholarships A Tri-Agency (SSHRC, NSERC and CIHR) Program and the Fonds d’enseignement et de recherche de la Faculté de pharmacie de l’Université Laval. The study project was funded by the Institut National du Cancer (INCA—Grant R11108AA). We would like to thank the statisticians associated with this project for their help and supervision of the analyses, Anne-Deborah Bouhnik and Simon Olivier Fournier.

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical standard

This study has been approved by the appropriate ethics committee and has been performed in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its later amendments.

References

  1. 1.
    Antoniou A, Pharoah PDP, Narod S et al (2003) Average risks of breast and ovarian cancer associated with BRCA1 or BRCA2 mutations detected in case series unselected for family history: a combined analysis of 22 studies. Am J Hum Genet 72:1117–1130PubMedCrossRefGoogle Scholar
  2. 2.
    Domchek SM, Gaudet MM, Stopfer JE et al (2010) Breast cancer risks in individuals testing negative for a known family mutation in BRCA1 or BRCA2. Breast Cancer Res Treat 119:409–414PubMedCrossRefGoogle Scholar
  3. 3.
    d’Agincourt-Canning L (2006) A gift or a yoke? Women’s and men’s responses to genetic risk information from BRCA1 and BRCA2 testing. Clin Genet 70:462–472PubMedCrossRefGoogle Scholar
  4. 4.
    Schwartz MD, Peshkin BN, Hughes C et al (2002) Impact of BRCA1/BRCA2 mutation testing on psychologic distress in a clinic-based sample. J Clin Oncol 20:514–520PubMedCrossRefGoogle Scholar
  5. 5.
    Bakos AD, Hutson SP, Loud JT et al (2008) BRCA mutation-negative women from hereditary breast and ovarian cancer families: a qualitative study of the BRCA-negative experience. Health Expect 11:220–231PubMedCrossRefGoogle Scholar
  6. 6.
    Foster C, Eeles R, Ardern-Jones A et al (2004) Juggling roles and expectations: dilemmas faced by women talking to relatives about cancer and genetic testing. Psychol Health 19:439–455CrossRefGoogle Scholar
  7. 7.
    Offit K, Garber JE, Grady M et al (2004) Asco curriculum: cancer genetics and cancer predisposition testing. ASCO, AlexandriaGoogle Scholar
  8. 8.
    Horsman D, Wilson BJ, Avard D et al (2007) Clinical management recommendations for surveillance and risk-reduction strategies for hereditary breast and ovarian cancer among individuals carrying a deleterious BRCA1 or BRCA2 mutation. J Obstet Gynaecol Cancer 29:45–60Google Scholar
  9. 9.
    Dorval M, Patenaude AF, Schneider KA 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 18:2135–2142PubMedGoogle Scholar
  10. 10.
    Miller SM, McDaniel SH, Rolland JS et al (2006) Individual, families, and the new era of genetics. W.W. Norton & Company, LondonGoogle Scholar
  11. 11.
    Dancyger C, Wiseman M, Jacobs C et al (2011) Communicating BRCA1/2 genetic test results within the family: a qualitative analysis. Psychol Health 26:1018–1035PubMedCrossRefGoogle Scholar
  12. 12.
    d’Agincourt-Canning L (2001) Experiences of genetic risk: disclosure and the gendering of responsibility. Bioethics 15:231–247PubMedCrossRefGoogle Scholar
  13. 13.
    Julian-Reynier C, Eisinger F, Chabal F et al (2000) Disclosure to the family of breast/ovarian cancer genetic test results: patient’s willingness and associated factors. Am J Med Genet 94:13–18PubMedCrossRefGoogle Scholar
  14. 14.
    Hamilton RJ, Bowers BJ, Williams JK (2005) Disclosing genetic test results to family members. J Nurs Scholarsh 37:18–24PubMedCrossRefGoogle Scholar
  15. 15.
    Peterson SK (2005) The role of the family in genetic testing: theoretical perspectives, current knowledge, and future directions. Health Educ Behav 32:627–639PubMedCrossRefGoogle Scholar
  16. 16.
    Rolland JS, Williams JK (2005) Toward a biopsychosocial model for 21st-century genetics. Fam Process 44:3–24PubMedCrossRefGoogle Scholar
  17. 17.
    Rimé B (2007) Interpersonal emotion regulation. In: Gross JJ (ed) Handbook of emotion regulation. Guilford, New York, pp 466–485Google Scholar
  18. 18.
    van Oostrom I, Meijers-Heijboer EJ, Duivenvoorden HJ et al (2007) A prospective study of the impact of genetic susceptibility testing for BRCA1/2 or HNPCC on family relationship. Psycho-Oncol 16:320–328CrossRefGoogle Scholar
  19. 19.
    Lapointe J, Bouchard K, Patenaude AF et al (2012) Incidence and predictors of positive and negative effects of BRCA1/2 genetic testing on familial relationships: a 3-year follow-up study. Genet Med 14:60–68PubMedCrossRefGoogle Scholar
  20. 20.
    de Groot JM (2002) The complexity of the role of social support in relation to the psychological distress associated with cancer. J Psychosom Res 52:277–278PubMedCrossRefGoogle Scholar
  21. 21.
    Cohen S, Underwood LG, Gottlieb BH (2000) Social support measurement and intervention: a guide for health and social scientists. Oxford University Press, New YorkGoogle Scholar
  22. 22.
    Sarason IG, Sarason BR, Potter EH 3rd et al (1985) Life events, social support, and illness. Psychosom Med 47:156–163PubMedGoogle Scholar
  23. 23.
    Thoits PA (1995) Stress, coping, and social support processes: where are we? What next? J Health Soc Behav Spec 53–79. http://www.ncbi.nlm.nih.gov/pubmed/7560850?dopt=Citation
  24. 24.
    Manne S, Audrain J, Schwartz M et al (2004) Associations between relationship support and psychological reactions of participants and partners to BRCA1 and BRCA2 testing in a clinic-based sample. Ann Behav Med 28:211–225PubMedCrossRefGoogle Scholar
  25. 25.
    Wylie JE, Smith KR, Botkin JR (2003) Effects of spouses on distress experienced by BRCA1 mutation carriers over time. Am J Med Genet Part C Semin Med Genet 119C:35–44PubMedCrossRefGoogle Scholar
  26. 26.
    Hughes C, Lerman C, Schwartz M et al (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 107:143–150PubMedCrossRefGoogle Scholar
  27. 27.
    Kenen R, Arden-Jones A, Eeles R (2004) Healthy women from suspected hereditary breast and ovarian cancer families: the significant others in their lives. Eur J Cancer Care 13:169–179CrossRefGoogle Scholar
  28. 28.
    van Oostrom I, Meijers-Heijboer H, Duivenvoorden HJ et al (2007) Family system characteristics and psychological adjustment to cancer susceptibility genetic testing: a prospective study. Clin Genet 71:35–42PubMedCrossRefGoogle Scholar
  29. 29.
    Bowen D, Bourcier E, Press N et al (2004) Effects of individual and family functioning on interest in genetic testing. Commun Genet 7:25–32CrossRefGoogle Scholar
  30. 30.
    den Heijer M, Seynaeve C, Vanheusden K et al (2011) Psychological distress in women at risk for hereditary breast cancer: the role of family communication and perceived social support. Psychooncology 20:1317–1323CrossRefGoogle Scholar
  31. 31.
    van Oostrom I, Meijers-Heijboer H, Duivenvoorden HJ et al (2007) Prognostic factors for hereditary cancer distress six months after BRCA1/2 or HNPCC genetic susceptibility testing. Eur J Cancer 43:71–77PubMedCrossRefGoogle Scholar
  32. 32.
    van Oostrom I, Meijers-Heijboer H, Lodder LN et al (2003) Long-term psychological impact of carrying a BRCA1/2 mutation and prophylactic surgery: a 5-year follow-up study. J Clin Oncol 21:3867–3874PubMedCrossRefGoogle Scholar
  33. 33.
    Claes E, Evers-Kiebooms G, Denayer L et al (2005) Predictive genetic testing for hereditary breast and ovarian cancer: psychological distress and illness representations 1 year following disclosure. J Genet Couns 14:349–363PubMedCrossRefGoogle Scholar
  34. 34.
    Koehly LM, Peters JA, Kuhn N et al (2008) Sisters in hereditary breast and ovarian cancer families: communal coping, social integration, and psychological well-being. Psycho-Oncol 17:812–821CrossRefGoogle Scholar
  35. 35.
    Mesters I, van den Borne H, McCormick L et al (1997) Openness to discuss cancer in the nuclear family: scale, development, and validation. Psychosom Med 59:269–279PubMedGoogle Scholar
  36. 36.
    Leventhal H, Leventhal EA, Cameron LD (2001) Representations, procedures, and affect in illness self-regulation: a perceptual-cognitive model. In: Baum A, Revenson TA, Singer JE (eds) Handbook of health psychology. Lawrence Erlbaum Associates, Mahwah, pp 19–47Google Scholar
  37. 37.
    Lazarus RS, Folkman S (1984) Stress, appraisal, and coping. Springer, New YorkGoogle Scholar
  38. 38.
    Gooding HC, Organista K, Burack J et al (2006) Genetic susceptibility testing from a stress and coping perspective. Soc Sci Med 62:1880–1890PubMedCrossRefGoogle Scholar
  39. 39.
    Andrieu N, Easton DF, Chang-Claude J et al (2006) Effect of chest x-rays on the risk of breast cancer among BRCA1/2 mutation carriers in the international BRCA1/2 carrier cohort study: a report from the embrace, genepso, geo-hebon, and ibccs collaborators’ group. J Clin Oncol 24:3361–3366PubMedCrossRefGoogle Scholar
  40. 40.
    Slade P, O’Neill C, Simpson AJ et al (2007) The relationship between perceived stigma, disclosure patterns, support and distress in new attendees at an infertility clinic. Hum Reprod 22:2309–2317PubMedCrossRefGoogle Scholar
  41. 41.
    Finlay E, Stopfer JE, Burlingame E et al (2008) Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations. Genet Test 12:81–91PubMedCrossRefGoogle Scholar
  42. 42.
    Horowitz M, Wilner N, Alvarez W (1979) Impact of event scale: a measure of subjective stress. Psychosom Med 41:209–218PubMedGoogle Scholar
  43. 43.
    Meiser B, Butow P, Schnieden V et al (2000) Psychological adjustment of women at increased risk of developing hereditary breast cancer. Psychol Health Med 5:377–388CrossRefGoogle Scholar
  44. 44.
    Fuhrer R, Rouillon F (1989) La version française de l’échelle ces-d (Center of Epidemiologic Studies-Depression). Description et traduction de l’échelle d’auto-évaluation. Psychiatry Psychobiol 4:163–166Google Scholar
  45. 45.
    Radloff LS, Lenore ST (1977) The ces-d scale: a self-report depression scale for research in the general population. Appl Psychol Meas 1:385–401CrossRefGoogle Scholar
  46. 46.
    Singer JD (1998) Using sas proc mixed to fit multilevel models, hierarchical models, and individual growth models. J Educ Behav Stat 24:323–355Google Scholar
  47. 47.
    Carlsson AH, Bjorvatn C, Engebretsen LF et al (2004) Psychosocial factors associated with quality of life among individuals attending genetic counseling for hereditary cancer. J Genet Couns 13:425–445PubMedCrossRefGoogle Scholar
  48. 48.
    Daly M, Barsevick AM, Miller S et al (2001) Communicating genetic test results to the family: a six-step, skills-building strategy. Family Commun Health 24:13–26CrossRefGoogle Scholar
  49. 49.
    Esplen MJ, Stuckless N, Hunter J et al (2009) The BRCA self-concept scale: a new instrument to measure self-concept in BRCA1/2 mutation carriers. Psycho-Oncol 18:1216–1229CrossRefGoogle Scholar
  50. 50.
    Read CY, Perry DJ, Duffy ME (2005) Design and psychometric evaluation of the psychological adaptation to genetic information scale. J Nurs Scholarsh 37:203–208PubMedCrossRefGoogle Scholar
  51. 51.
    Cypowyj C, Eisinger F, Morin M et al (2003) Information-seeking behaviour and psycho-social interactions during the genetic testing process. Commun Genet 6:224–234CrossRefGoogle Scholar
  52. 52.
    Wills TA, Shinar O (2000) Measuring perceived and received social support. In: Cohen S, Underwood LG, Gottlieb BH (eds) Social support measurement and intervention: a guide for health and social scientists. Oxford University Press, Oxford, pp 86–135Google Scholar
  53. 53.
    Helgeson VS, Cohen S, Schulz R et al (2000) Group support interventions for women with breast cancer: who benefits from what? Health Psychol 19:107–114PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media Dordrecht 2013

Authors and Affiliations

  • Julie Lapointe
    • 1
    • 2
  • Michel Dorval
    • 1
    • 2
    • 3
  • Catherine Noguès
    • 4
    • 5
  • Roxane Fabre
    • 6
    • 7
    • 8
  • GENEPSO Cohort
  • Claire Julian-Reynier
    • 6
    • 7
    • 8
    • 9
  1. 1.Faculté de PharmacieUniversité LavalQuebecCanada
  2. 2.URESPCentre de Recherche FRSQ du Centre Hospitalier Affilié Universitaire de QuébecQuebecCanada
  3. 3.Centre des Maladies du sein Deschênes-FabiaHôpital du Saint-SacrementQuebecCanada
  4. 4.Centre René HugueninSaint-CloudFrance
  5. 5.Institut CurieParisFrance
  6. 6.Inserm, U912MarseilleFrance
  7. 7.Aix-Marseille Université, U912MarseilleFrance
  8. 8.IRD, U912MarseilleFrance
  9. 9.Institut Paoli-CalmettesMarseille Cedex 9France

Personalised recommendations