This is shown by research by the Dutch Federation of Cancer Patient Organizations (NFK) among 434 people with an increased risk of cancer. These are people who are a proven carrier of a hereditary predisposition to cancer, people who have a familial predisposition to cancer and people who have a (hereditary) disorder or syndrome with an increased risk of cancer.
Of the people who undergo medical check-ups for their increased risk of cancer, 78% need a fixed point of contact. Two-thirds also have that fixed point of contact and rate this with an average score of 8.2. Of the people who need this, three out of ten people lack such a point of contact. “It is a pity that a doctor is only responsible for his own piece. It would be nice to have all the controls and one conversation instead of each one for himself, ”says one of the respondents. Another respondent: ,, A permanent point of contact is very important to me. I have had this for a year and it gives me so much peace of mind. Before this I had a different doctor or face every time but never the same. For a patient this gives a feeling that they do not recognize you as a person but as a reference number. ”
Two thirds of the respondents needed information about the increased risk of cancer during his or her genetic testing. More than three quarters of the respondents had also received this information. Only one in ten people who needed it did not. The respondents are largely satisfied with the information provided. They give good grades to information about medical check-ups (8.1), information about how to inform their family (8.1) or information about preventive treatment options (8). Although some respondents feel that the information provision was inadequate, for example about psychosocial and social consequences.
According to NFK, the poll shows that clinical geneticists and genetic counselors seem to feel well that there is a need for information during a genetic test, and also for what kind of information. “That is a nice finding, but this poll also reveals a clear point for improvement when it comes to the permanent point of contact. This is still too often lacking in people who have medical check-ups for their increased risk of cancer ”, says Arja Broenland, director of NFK.
Slightly more than half of the respondents indicate that their GP played no role when it comes to their increased risk of cancer. Where this did happen, it was mainly about referrals to the hospital and listening to their concerns. According to NFK, the limited role of the GP is understandable, because people are often referred by the hospital for genetic testing after cancer diagnosis. Nevertheless, the GP can certainly play a significant role. This research shows that people who had a GP who listened to their concerns are less likely to miss something in the care and support of their GP.
NFK brings the results of the research to the attention of relevant professional organizations, with the aim of discussing together how the care for people with an increased risk of cancer can be optimized.
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