Cancer can affect anyone. Nevertheless, medical geneticist Margreet Ausems sees predominantly white and highly educated patients in her consulting room. She rarely sees patients with further education or migration backgrounds. “But of course those people get cancer too. How come they don’t come with us?”
Ausems specializes in cancer. Patients with breast cancer or ovarian cancer would come to her and be tested to see if a genetic predisposition played a role in the development of their cancer. This, then, is the starting point for an inquiry into carrier status in the family. And the patient himself may be eligible for preventive measures, additional tests, or tailored treatment. “Something to prevent someone from dying of cancer at an early age.”
It’s critical that all cancer patients who are eligible for DNA testing are offered it, Azems believes. “How sad that we’re not reaching certain groups.” Azems has felt that way since he started in medical genetics. “One year after graduation, I worked as a cat doctor in emergency care and surgery at Overwecht in Utrecht. An amazing year, the whole community went through. But when I started working as a genetics assistant at the university hospital a year later, that diversity disappeared.
Ausems strives to improve access to DNA research. He trains general practitioners and medical specialists. He set up communication training for medical professionals. Made patient letters more understandable for illiterate people. “I’m proud of everything we’ve set up. But it’s not enough. We still don’t sufficiently reach the most vulnerable groups of patients. So we have to organize healthcare differently. As professor of clinical oncology at UMC Utrecht, Ausems wants to work on this. He gave his opening speech at the beginning of April.
You should not tell a story and then ask: Did you understand everything? Then everyone says yes
How big are the differences?
“We started asking all cancer patients who were referred to us: What is your highest level of education? We immediately saw that very few were low-skilled: 4 percent. Almost 40 percent of referred patients were highly educated.
“We later showed that significantly less genetic testing is done in young Turkish and Moroccan-Dutch breast cancer patients: 48 percent of patients with a Turkish or Moroccan background received DNA testing, compared to 81 percent of patients without a migration background.
“These women are often the ones with good reason to do DNA research. Women of Turkish or Moroccan background are less likely to get breast cancer, but when they do get it, it’s often at a young age and the cancer is more aggressive.
How do they stay away?
“Some patients have a low level of health literacy. This means they are less able to find, understand and use information about their health. As a coach of someone with cancer, you have to recognize that problem. You don’t tell a story and then ask: Did you understand everything? Then everyone says yes. A simple way to find out if people understand the information is the question-back method. What I ask is: What are you going to tell your son about our conversation?
As a health care provider, you may not know that there are people who are already having a hard time getting to an appointment
“As doctors, we often underestimate how complex a treatment process is. Referral to a geneticist at a teaching hospital is a hurdle. A colleague once saw a man standing in front of an elevator. One day he didn’t get an appointment, but the next day he couldn’t find where he was supposed to be. Already wanted to know, so he rode his moped from Hilversum to the hospital in Utrecht.
“If you, as a healthcare provider, talk to that man the next day, you never know. You may not know that there are people who already have a hard time showing up to an appointment. We didn’t stop there.
“If the attending surgeon, gynecologist or urologist talks to the patient about DNA testing, I think we can make genetic cancer treatment more accessible. Only patients with an abnormal result come to a clinical geneticist. We have shown that it is possible. That it works.” But there was opposition to it.”
“From practitioners who say, ‘Genetics, it’s your job, you have to do it, we don’t have time for it.’ And fellow geneticists, who think it’s our job. But we’re a very small profession. There are only 160 medical geneticists in the Netherlands, some of whom do oncology. So there’s a waiting list. If we make genetics more mainstream it works more efficiently.”
You put the ball on all plans with the coaches. You are not targeting patients.
“Of course we can create leaflets or websites for patients. But if you change the behavior of therapists, I believe we will reach more people. Take GPs. They sometimes think they don’t have to intervene with a cancer patient because it happens in hospital. But that doesn’t always happen. So I tell them in refresher courses: You have a role to play.
“If you see someone under the age of 36 who has breast cancer, doesn’t speak the language well, or is somewhat illiterate, and you don’t see a letter from a medical geneticist on file, I hope you ask questions about that. That.
I want to implement it across the country. But I didn’t get the funds for it
“We have carried out a pilot in which we encourage general practitioners to actively identify ovarian cancer survivors in their practice and invite them for clinical genetic testing. Ovarian cancer is hereditary in 10 to 15 percent of women. Therefore, from 2015, all women with ovarian cancer are eligible for genetic testing.
“Good, but I’m worried about all the women who have had ovarian cancer in the past. There are over 5,000 women left, all of whom have nieces, daughters, and sisters who could benefit from DNA testing. That’s low-hanging fruit. It’s not complicated. You save lives with it. It’s all over the country. I would like to implement it, but I have not received the funds for it.
“You never find out. You submit a proposal, it’s evaluated and then rejected.
But doesn’t a lot of money go into molecular cancer research in the Netherlands?
“Thrills. And the social impact of it is minimal. That’s what annoys me too. Yes, of course what we’re doing is not very innovative, but it saves lives. The GPs involved have a lot of knowledge about ovarian cancer. Without a letter from a medical geneticist, they can treat someone with cancer without a letter from them. In practice they are very cautious.
A version of this article also appeared in the May 1, 2023 issue.
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