Skip to main content
SpringerLink
Log in

The Quality of Genetic Counseling and Connected Factors as Evaluated by Male BRCA1/2 Mutation Carriers in Finland

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

There is little written about the quality of genetic counseling for men with the BRCA1/2 mutation. The purpose of this study was to describe the quality of genetic counseling and connected factors according to Finnish male BRCA1/2 mutation carriers’ (n = 35) perspectives and reasons for seeking genetic counseling. Data were collected from the Departments of Clinical Genetics at five Finnish university hospitals. The exploratory study design was conducted using a 51-item questionnaire based on a previously devised quality of counseling model and analyzed using non-parametric tests and principle content analysis. The satisfaction level with genetic counseling was high, especially with regard to the content of genetic counseling. The benefit of genetic counseling on the quality of life differed significantly (p < 0.001–0.009) from other factors. In particular, genetic counseling was in some cases associated to reduce the quality of life. Only 49 % of the male carriers felt they received sufficient counseling on social support. Attention to individual psychosocial support was proposed as an improvement to genetic counseling. Primary and secondary reasons for seeking genetic counseling and background information, such as education, affected the perceived quality of genetic counseling. The results of the study could be used to tailor genetic counseling for male BRCA1/2 mutation carriers.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2

Similar content being viewed by others

References

  • Bjorvatn, C., Eide, G. E., Hanestad, B. R., Øyen, N., Havik, O. E., Carlsson, A., et al. (2007). Risk perception, worry and satisfaction related to genetic counseling for hereditary cancer. Journal of Genetic Counseling, 16(2), 211–222.

    Article  PubMed  Google Scholar 

  • Braithwaite, D., Emery, J., Walter, F., Prevost, T., & Sutton, S. (2006). Psychological impact of genetic counseling for familial cancer: systematic review and meta-analysis. Familial Cancer, 5, 61–75.

    Article  PubMed  Google Scholar 

  • Daly, P. A., Nolan, C., Green, A., Ormiston, W., Cody, N., McDevitt, T., et al. (2003). Predictive testing for BRCA1 and BRCA2 mutations: a male contribution. Annals of Oncology, 14(4), 549–553.

    Article  CAS  PubMed  Google Scholar 

  • EuroGentest (2008). Recommendations for genetic counselling related to genetic testing. http://www.eurogentest.org/index.php?id=674. Accessed 26 January 2014.

  • Fantini-Hauwel, C., Dauvier, B., Arciszewski, T., Antoine, P., & Manouvrier, S. (2011). Genetic testing for hereditary cancer: effects of alexithymia and coping strategies on variations in anxiety before and after result disclosure. Psychology and Health, 26(7), 855–873.

    Article  PubMed  Google Scholar 

  • Hallowell, N., Ardern-Jones, A., Eeles, R., Foster, C., Lucassen, A., Moynihan, C., et al. (2005). Men’s decision-making about predictive BRCA1/2 testing: the role of family. Journal of Genetic Counseling, 14(3), 207–217.

    Article  CAS  PubMed  Google Scholar 

  • Hallowell, N., Arden-Jones, A., Eeles, R., Foster, C., Lucassen, A., Moynihan, C., et al. (2006). Guilt, blame and responsibility: men’s understanding of their role in the transmission of BRCA1/2 mutations within their family. Sociology of Health & Illness, 28(7), 969–988.

    Article  Google Scholar 

  • Kaakinen, P., Kääriäinen, M., & Kyngäs, H. (2012a). The chronically ill patients’ quality of counselling in the hospital. Journal of Nursing Education and Practice, 2(4), 114–123.

    Article  Google Scholar 

  • Kaakinen, P., Patala-Pudas, L., Kyngäs, H., & Kääriäinen, M. (2012b). Counseling chronically ill adults in the healthcare setting: an integrative literature review. Journal of Nursing Education and Practice, 2(3), 185–202.

    Article  Google Scholar 

  • Kaakinen, P., Kyngäs, H., & Kääriäinen, M. (2013). Predictors of good-quality counselling from the perspective of hospitalised chronically ill adults. Journal of Clinical Nursing, 22(19–20), 2704–2713.

    Article  PubMed  Google Scholar 

  • Kääriäinen, M. (2007). Quality of counselling: The development of a hypothetical model (Finnish). Doctoral Dissertation. Acta Universitas Ouluensis D937. Oulu University Press, Oulu.

  • Kääriäinen, M., & Kyngäs, H. (2010). The quality of patient education evaluated by the health personnel. Scandinavian Journal of Caring Science, 24(3), 548–556.

    Article  Google Scholar 

  • Kääriäinen, M., Kukkurainen, M. L., Kyngäs, H., & Karppinen, L. (2011). Improving the quality of rheumatoid arthritis patients’ education using written information. Musculoskeletal Care, 9(1), 19–24.

    Article  PubMed  Google Scholar 

  • Kyngäs, H., Kukkurainen, M. L., & Mäkeläinen, P. (2005). Patients’ education from the perspective of health care providers (Finnish). Tutkiva hoitotyö, 3(2), 12–17.

    Google Scholar 

  • Levy-Lahad, E., & Friedman, E. (2007). Cancer risks among BRCA1 and BRCA2 mutation carriers. British Journal of Cancer, 96(1), 11–15.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Liede, A., Metcalfe, K., Hanna, D., Hoodfar, E., Snyder, C., Durham, C., et al. (2000). Evaluation of the needs of male carriers of mutations in BRCA1 and BRCA2 who have undergone genetic counseling. American Journal of Human Genetics, 67(6), 1494–1504.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Lipponen, K., Kyngäs, H., & Kääriäinen, M. (2006). Surgical nurses readiness for patient counselling. Journal of Orthopaedic Nursing, 10, 221–227.

    Article  Google Scholar 

  • Lobb, E. A., Butow, P. N., Meiser, B., Barratt, A., Gaff, C., Young, M. A., et al. (2002). Tailoring communication in consultations with women from high risk breast cancer families. British Journal of Cancer, 87, 502–508.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Lodder, L., Frets, P. G., Trijsburg, R. W., Tibben, A., Meijers-Heijboer, E. J., Duivenvoorden, H. J., et al. (2001). Men at risk of being a mutation for hereditary breast /ovarian cancer: an exploration of attitudes and psychological functioning during genetic testing. European Journal of Human Genetics, 9(7), 492–500.

    Article  CAS  PubMed  Google Scholar 

  • Mendes, A. F., Santos, T. A., & Sousa, L. (2011). Experiencing genetic counselling for hereditary cancers: the client’s perspective. European Journal of Cancer Care, 20, 204–211.

    Article  CAS  PubMed  Google Scholar 

  • Miki, Y., Swenson, J., Shattuck-Eidens, D., Futreal, P. A., Harshman, K., Tavtigian, S., et al. (1994). A strong candidate for the breast and ovarian cancer susceptibility gene BRCA1. Science, 266(5182), 66–71.

    Article  CAS  PubMed  Google Scholar 

  • Petrucelli, N., Daly, M. B., & Feldman, G. L. (1998). BRCA1 and BRCA2 hereditary breast and ovarian cancer. NCBI Bookshelf, National Institutes of Health. http://www.ncbi.nlm.nih.gov/books/NBK1247/ Updated 26 September 2013. Accessed 21 January 2014.

  • Polit, D. F., & Beck, C. T. (2006). The content validity index: are you sure you know what’s being reported? Critique and recommendations. Research in Nursing & Health, 29, 489–497.

    Article  Google Scholar 

  • Resta, R., Biesecker, B. B., Bennett, R. L., Blum, S., Hahn, S. E., Strecker, M. N., et al. (2006). A new definition of genetic counseling: national society of genetic counselors’ task force report. Journal of Genetic Counseling, 15(2), 77–83.

    Article  PubMed  Google Scholar 

  • Shiloh, S., Dagan, E., Friedman, I., Blank, N., & Friedman, E. (2013). A follow-up study on men tested for BRCA/BRCA2 mutations: impacts and coping process. Psycho-Oncology, 22, 417–425.

    PubMed  Google Scholar 

  • Strømsvik, N., Råheim, M., Øyen, N., & Gjengedal, E. (2009). Men in the women’s world of hereditary breast cancer – a systematic review. Familial Cancer, 8(3), 221–229.

    Article  PubMed  Google Scholar 

  • Strømsvik, N., Råheim, M., Øyen, N., Engebretsen, L. F., & Gjengedal, E. (2010). Stigmatization and male identity: Norwegian males experience after identification as BRCA1/2 mutation carriers. Journal of Genetic Counseling, 19(4), 360–370.

    Article  PubMed  Google Scholar 

  • Strømsvik, N., Råheim, M., & Gjengedal, E. (2011). Cancer worry among Norwegian male BRCA1/2 mutation carriers. Familial Cancer, 10, 597–603.

    Article  PubMed  PubMed Central  Google Scholar 

  • Wooster, R., Bignell, G., Lancaster, J., Swift, S., Seal, S., Mangion, J., et al. (1995). Identification of the breast cancer susceptibility gene BRCA2. Nature, 378(6559), 789–792.

    Article  CAS  PubMed  Google Scholar 

Download references

Acknowledgments

The authors would like to thank Drs Kristiina Aittomäki, Jaakko Ignatius, Tarja Mononen, Kalle Simola and the assistants at the Departments of Clinical Genetics at the participating university hospitals for helpful discussions and data collection. We thank genetic nurses at the Departments of Clinical Genetics for sharing their expertise in the instrument developing process. M.Sc. Helena Laukkala is thanked for statistical analysis guidance. We also thank all male carriers who participated in this study. This study was partly supported by the Department of Clinical Genetics at Oulu University Hospital (Genetic Diseases in Northern Finland research group).

Conflict of Interest

Outi Kajula, Maria Kääriäinen, Jukka S. Moilanen and Helvi Kyngäs declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.

Animal Studies

No Animal studies were carried out by the authors for this article.

Author information

Authors and Affiliations

  1. Research Unit of Nursing Science and Health Management, University of Oulu, P.O. Box 5000, 90014 University of Oulu, Oulu, Finland

    Outi Kajula, Maria Kääriäinen & Helvi Kyngäs

  2. Medical Research Center, Oulu University Hospital and University of Oulu, Oulu, Finland

    Outi Kajula, Maria Kääriäinen, Jukka S. Moilanen & Helvi Kyngäs

  3. Department of Clinical Genetics, Oulu University Hospital, Oulu, Finland

    Outi Kajula & Jukka S. Moilanen

  4. Northern Ostrobothnia Hospital District, Oulu, Finland

    Helvi Kyngäs

Authors
  1. Outi Kajula
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Maria Kääriäinen
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Jukka S. Moilanen
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Helvi Kyngäs
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Outi Kajula.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Kajula, O., Kääriäinen, M., Moilanen, J.S. et al. The Quality of Genetic Counseling and Connected Factors as Evaluated by Male BRCA1/2 Mutation Carriers in Finland. J Genet Counsel 25, 413–421 (2016). https://doi.org/10.1007/s10897-015-9885-x

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10897-015-9885-x

Keywords

Search

Navigation