Risk perception after genetic counseling in patients with increased risk of cancer

Abstract

Background: Counselees are more aware of genetics and seek information, reassurance, screening and genetic testing. Risk counseling is a key component of genetic counseling process helping patients to achieve a realistic view for their own personal risk and therefore adapt to the medical, psychological and familial implications of disease and to encourage the patient to make informed choices 12.The aim of this study was to conceptualize risk perception and anxiety about cancer in individuals attending to genetic counseling.

Methods: The questionnaire study measured risk perception and anxiety about cancer at three time points: before and one week after initial genetic counseling and one year after completed genetic investigations. Eligibility criteria were designed to include only index patients without a previous genetic consultation in the family. A total of 215 individuals were included. Data was collected during three years period.

Results: Before genetic counseling all of the unaffected participants subjectively estimated their risk as higher than their objective risk. Participants with a similar risk as the population overestimated their risk most. All risk groups estimated the risk for children's/siblings to be lower than their own. The benefits of preventive surveillance program were well understood among unaffected participants.The difference in subjective risk perception before and directly after genetic counseling was statistically significantly lower in all risk groups. Difference in risk perception for children as well as for population was also statistically significant. Experienced anxiety about developing cancer in the unaffected subjects was lower after genetic counseling compared to baseline in all groups. Anxiety about cancer had clear correlation to perceived risk of cancer before and one year after genetic investigations.The affected participants overestimated their children's risk as well as risk for anyone in population. Difference in risk perception for children/siblings as for the general population was significant between the first and second measurement time points. Anxiety about developing cancer again among affected participants continued to be high throughout this investigation.

Conclusion: The participant's accuracy in risk perception was poor, especially in low risk individuals before genetic counseling. There was a general trend towards more accurate estimation in all risk groups after genetic counseling. The importance of preventive programs was well understood. Cancer anxiety was prevalent and associated with risk perception, but decreased after genetic counseling.1 National Society of Genetic Counselors (2005), Genetic Counseling as a Profession. Available at http://www.nsgc.org/about/definition.cfm (accessed November 25th 2007)2 Julian-Reynier C., Welkenhuysen M-, Hagoel L., Decruyenaere M., Hopwood P. (2003) Risk communication strategies: state of the art and effectiveness in the context of cancer genetic services. Eur J of Human Genetics 11, 725736.

Figure 1

Study material. Flow chart illustrates the included and excluded patients and the number of respondents in each questionnaire.

Figure 2

Own subjective risk perception. Own subjective risk perception in unaffected patients before and after genetic counseling illustrated separately stratified according to objective risk estimated by the clinical geneticist (population, low, moderate and high risk). The mean, standard, and 95% CI and outliers are shown.

Figure 3

Change in risk perception among unaffected participants. Increases and decreases in perceived risk after genetic counseling for all unaffected patients who responded to the first and second questionnaires (n = 90). Up-going arrow shows increase in risk perception after genetic counseling and down-going arrow show decrease in risk perception after genetic counseling. When two dots are presented but no arrow, it means that the risk perception has not changed. Every arrow represents one patient.

Figure 4

Risk perception form siblings/children. Risk perception for sibling and children before and after genetic counseling in unaffected patients illustrated separately stratified according to objective risk estimated by the clinical geneticist (population, low, moderate and high risk). The mean, standard error, 95% CI and outliers are shown.

Figure 5

Risk perception for the general population. Risk perception for the general population before and after genetic counseling in unaffected patients illustrated separately stratified according to objective risk estimated by the clinical geneticist (population, low, moderate and high risk). The mean, standard error, 95% CI and outliers are shown.

Figure 6

Cancer anxiety. Anxiety in unaffected an affected patients before, after genetic counseling and 1 year after genetic investigations is illustrated. Unaffected patients are stratified according to objective risk estimated by the clinical geneticist (population, low, moderate and high risk). The mean and standard errors are shown.