Skip to main content
SpringerLink
Log in

What Information Do Cancer Genetic Counselees Prioritize?

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

This study explored the informational needs of individuals attending genetic counseling for hereditary cancer, using a free-choice and a forced choice method. Prior to the consultation the informational needs of 334 counselees from Sweden and Norway were assessed by the QUOTE-gene (ca) questionnaire and by a study specific forced choice method, using Q-methodology. Questionnaire responses indicated that counselees’ major concerns pertained to the need to be taken seriously, to be provided with sufficient risk estimation and medical/genetic information and to be involved in the decision making process. Furthermore, prior to counseling, counselees noted that the counselors’ consideration and skillfulness were also extremely important. Analysis of the Q-sorting results revealed that counselees’ needs could be assigned to one of five groups: the “need for facts; caring communication and medical information; information and support in communicating the genetic information to others; practical care and practical/medical information”. Particularly noteworthy, counselees with varying backgrounds characteristics prioritized different needs. Cancer genetic counselees probably have different needs due to their medical and demographic background when attending genetic counseling. Addressing counselees’ specific concerns more sufficiently and thereby increasing the overall effectiveness of the counseling session requires increased insight into individual needs, by for instance, utilizing screening methods such as QUOTE-gene (ca) prior to the counseling session.

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

Notes

  1. Quality of Care Through the Patient’s Eyes

  2. Other factor solutions were examined, but this solution appeared to be most sufficient.

  3. The numbers in the parentheses refer to the statement numbers written on Q-cards.

References

  • Act. (2003-12-05). Act regarding human medical use of biotechnology. Norwegian legislation.

  • Albada, A., Ausems, M. G., Bensing, J. M., & van Dulmen, S. (2009a). Tailored information about cancer risk and screening: a systematic review. Patient Education and Counseling, 77(2), 155–171.

    Article  Google Scholar 

  • Albada, A., van Dulmen, S., Otten, R., Bensing, J. M., & Ausems, M. G. (2009b). Development of E-info gene(ca): a website providing computer-tailored information and question prompt prior to breast cancer genetic counseling. Journal of Genetic Counseling, 18(4), 326–338.

    Article  Google Scholar 

  • Baile, W. F., & Aaron, J. (2005). Patient-physician communication in oncology: past, present, and future. Current Opinion in Oncology, 17(4), 331–335.

    Article  PubMed  Google Scholar 

  • Biesecker, B. B. (2001). Goals of genetic counseling. Clinical Genetics, 60(5), 323–330.

    Article  PubMed  CAS  Google Scholar 

  • Bjorvatn, C., Eide, G. E., Hanestad, B. R., Oyen, 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 

  • Collins, V., Halliday, J., Warren, R., & Williamson, R. (2000). Assessment of education and counselling offered by a familial colorectal cancer clinic. Clinical Genetics, 57(1), 48–55.

    Article  PubMed  CAS  Google Scholar 

  • Fagerlind, H., Lindblad, A. K., Bergstrom, I., Nilsson, M., Naucler, G., Glimelius, B., et al. (2008). Patient-physician communication during oncology consultations. Psycho-Oncology, 17(10), 975–985.

    Article  PubMed  Google Scholar 

  • Hallowell, N., Murton, F., Statham, H., Green, J. M., & Richards, M. P. (1997). Women’s need for information before attending genetic counselling for familial breast or ovarian cancer: a questionnaire, interview, and observational study. BMJ, 314(7076), 281–283.

    Article  PubMed  CAS  Google Scholar 

  • Holloway, S., Porteous, M., Cetnarskyj, R., Anderson, E., Rush, R., Fry, A., et al. (2004). Patient satisfaction with two different models of cancer genetic services in south-east Scotland. British Journal of Cancer, 90(3), 582–589.

    Article  PubMed  CAS  Google Scholar 

  • Meiser, B., Gaff, C., Julian-Reynier, C., Biesecker, B. B., Esplen, M. J., Vodermaier, A., et al. (2006). International perspectives on genetic counseling and testing for breast cancer risk. Breast Disease, 27, 109–125.

    PubMed  Google Scholar 

  • Metcalfe, A., Werrett, J., Burgess, L., & Clifford, C. (2007). Psychosocial impact of the lack of information given at referral about familial risk for cancer. Psycho-Oncology, 16(5), 458–465.

    Article  PubMed  Google Scholar 

  • Michie, S., Marteau, T. M., & Bobrow, M. (1997). Genetic counselling: the psychological impact of meeting patients’ expectations. Journal of Medical Genetics, 34(3), 237–241.

    Article  PubMed  CAS  Google Scholar 

  • Peck, B. M., Ubel, P. A., Roter, D. L., Goold, S. D., Asch, D. A., Jeffreys, A. S., et al. (2004). Do unmet expectations for specific tests, referrals, and new medications reduce patients’ satisfaction? Journal of General Internal Medicine, 19(11), 1080–1087.

    Article  PubMed  Google Scholar 

  • Pieterse, A., van Dulmen, S., Ausems, M., Schoemaker, A., Beemer, F., & Bensing, J. (2005a). QUOTE-gene(ca): development of a counselee-centered instrument to measure needs and preferences in genetic counseling for hereditary cancer. Psycho-Oncology, 14(5), 361–375.

    Article  Google Scholar 

  • Pieterse, A. H., Ausems, M. G., Van Dulmen, A. M., Beemer, F. A., & Bensing, J. M. (2005b). Initial cancer genetic counseling consultation: change in counselees’ cognitions and anxiety, and association with addressing their needs and preferences. American Journal of Medical Genetics. Part A, 137(1), 27–35.

    Article  Google Scholar 

  • Pieterse, A. H., van Dulmen, A. M., Ausems, M. G., Beemer, F. A., & Bensing, J. M. (2005b). Communication in cancer genetic counselling: does it reflect counselees’ previsit needs and preferences? British Journal of Cancer, 92(9), 1671–1678.

    Article  CAS  Google Scholar 

  • Rao, J. K., Weinberger, M., & Kroenke, K. (2000). Visit-specific expectations and patient-centered outcomes: a literature review. Archives of Family Medicine, 9(10), 1148–1155.

    Article  PubMed  CAS  Google Scholar 

  • Roshanai, A. H., Rosenquist, R., Lampic, C., & Nordin, K. (2009). Does enhanced information at cancer genetic counseling improve counselees’ knowledge, risk perception, satisfaction and negotiation of information to at-risk relatives?—a randomized study. Acta Oncologica, 48(7), 999–1009.

    Article  PubMed  Google Scholar 

  • Skinner, C. S., Schildkraut, J. M., Berry, D., Calingaert, B., Marcom, P. K., Sugarman, J., et al. (2002). Pre-counseling education materials for BRCA testing: does tailoring make a difference? Genetic Testing, 6(2), 93–105.

    Article  PubMed  Google Scholar 

  • Stephenson, W. (1952). Q-methodology and the projective techniques. Journal of Clinical Psychology, 8(3), 219–229.

    Article  PubMed  CAS  Google Scholar 

  • Van Asperen, C. J., Van Dijk, S., Zoeteweij, M. W., Timmermans, D. R., De Bock, G. H., Meijers-Heijboer, E. J., et al. (2002). What do women really want to know? Motives for attending familial breast cancer clinics. Journal of Medical Genetics, 39(6), 410–414.

    Article  PubMed  Google Scholar 

  • Watts, S., & Stenner, P. (2005). The subjective experience of partnership love: a Q Methodological study. The British Journal of Social Psychology, 44(Pt 1), 85–107.

    Article  PubMed  Google Scholar 

  • Webler, T., Danielson, S., & Tuler, S. (2009). Using Q method to reveal social perspectives in environmental research. Social and Environmental Research Institute

  • WHO. (2000). The World Health Report. Health system: improving peformance. Geneva: World Health Organization.

    Google Scholar 

  • Zebiene, E., Kairys, J., & Zokas, I. (2004). Influence of patient’s social and demographic characteristics on patient’s expectations for medical consultation. Medicina (Kaunas, Lithuania), 40(5), 467–474.

    Google Scholar 

Download references

Acknowledgment

This study would not be possible without the contribution of individuals participating in the study and financial support from the Swedish Cancer Society.

Author information

Authors and Affiliations

  1. Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden

    Afsaneh Hayat Roshanai, Claudia Lampic, Charlotta Ingvoldstad & Karin Nordin

  2. Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden

    Claudia Lampic

  3. Division of Clinical Genetics, Department of Clinical and Experimental Medicine, Faculty of Health Sciences, Linköpings University Hospital, Linköping, Sweden

    Marie Stenmark Askmalm

  4. Department of Public Health and Primary Health Care, University of Bergen, Bergen, Norway

    Chathrine Bjorvatn & Karin Nordin

  5. Department of Immunology, Genetics and Pathology, Rudbeck Laboratory, Uppsala University, Uppsala, Sweden

    Richard Rosenquist

  6. Department of Public Health and Caring Sciences, BMC, Box 564, SE-751 22, Uppsala, Sweden

    Afsaneh Hayat Roshanai

Authors
  1. Afsaneh Hayat Roshanai
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Claudia Lampic
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Charlotta Ingvoldstad
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Marie Stenmark Askmalm
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Chathrine Bjorvatn
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Richard Rosenquist
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Karin Nordin
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Afsaneh Hayat Roshanai.

Appendix 1

Appendix 1

Table 10 Factors predicting Swedish and Norwegian participants’ priorities of QUOTE-gene’s generic dimensions
Full size table
Table 11 Multiple Regression analysis (Method: Stepwise) predicting participants’ priorities of QUOTE-gene’s cancer-specific items
Full size table

Rights and permissions

Reprints and permissions

About this article

Cite this article

Hayat Roshanai, A., Lampic, C., Ingvoldstad, C. et al. What Information Do Cancer Genetic Counselees Prioritize?. J Genet Counsel 21, 510–526 (2012). https://doi.org/10.1007/s10897-011-9409-2

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10897-011-9409-2

Keywords

Search

Navigation