A new questionnaire for people requesting genetic counselling in relation to cancer improves the quality of such counselling (genetic diagnostics and advice). The questionnaire helps with the recognition and discussion of the psychosocial problems many people experience, and improves the provision of appropriate information. The questionnaire was developed and clinically tested in Willem Eijzenga’s doctoral research. Eijzenga will defend his doctorate at the University of Amsterdam (UvA) on Friday, 5 September.
Genetic testing for cancer is a psychological burden for many people. Around a quarter of those who go for genetic testing experience emotional difficulties and feelings of depression and/or anxiety. Around 70% experience problems more specifically related to issues of genetic inheritance and the process of seeking genetic counselling. These can include problems related to the decision to have a DNA test, the wish to have children, the ability to get life insurance, communicating with relatives and dealing with cancer.
People in the Netherlands with an increased risk of cancer, either because they were diagnosed with cancer at a young age or because they have a family history of a particular type of cancer, can seek genetic counselling at one of nine polyclinics for hereditary cancers. These clinics provide information and offer DNA tests. Based on that test and a family history, people can receive medical advice.
‘Previous research revealed that communication during the process of providing genetic counselling is largely focused on the family history of cancer, hereditary factors and the investigative procedure. This means potential psychosocial problems are perhaps less well recognised’, explains Eijzenga. ‘The questionnaire I developed therefore covers a wide range of these psychosocial problems. It appears that using the questionnaire in clinical practice improves the quality of counselling.’
The results from the questionnaire are made available to the genetic counsellor prior to the advisory consultation. This leads to more psychosocial problems being addressed in that first meeting. Counsellors are more aware of any problems and are more pro-active in discussing the problems that people can experience. The outcome is that people seeking advice are less anxious and worried about cancer a month after the counselling. This outcome does not require the consultation with the counsellor to be any longer than it would otherwise be.
Willem Eijzenga, Psychosocial Problems in Cancer Genetic Counseling: Detecting and Facilitating Communication. Supervisor: Prof. N.K. Aaronson. Co-supervisor: Dr E.M.A. Bleiker.
The doctoral thesis defence ceremony will take place on Friday, 5 September at 10:00.
Location: Agnietenkapel, Oudezijds Voorburgwal 231, Amsterdam.