“Working Together to Detect Hereditary High Cholesterol Early”

In the Netherlands, an estimated 60,000 people suffer from familial hypercholesterolemia (FH), often without even knowing it. At the Groene Hart Hospital, nurse practitioner Lenneke van Tol and internist-vascular specialist Ted Koster have been working for over twenty years to improve care for this patient group. Through close collaboration with the LEEFH Foundation and primary care physicians, they aim to detect FH earlier, identify affected families, and prevent seemingly healthy people from developing serious cardiovascular diseases.

Nurse practitioner Lenneke van Tol and internist-vascular specialist Ted Koster jointly established the vascular medicine clinic at the Groene Hart Hospital in 2003. People with familial hypercholesterolemia (FH) are treated here. After more than twenty years, the desire arose to establish separate care for this group. “Nowadays, we dedicate half a day each week exclusively to people with FH,” says Ted Koster. “That’s necessary because it’s a very distinct category. Generally speaking, these are perfectly healthy people who don’t yet have cardiovascular problems and whom we want to keep healthy.” Early diagnosis is crucial in this regard, according to Lenneke: “There is a group of people who don’t yet know they have FH. We want to identify them, because the sooner you start medication and adopt a healthy lifestyle, the better. This can prevent them from developing cardiovascular problems. We can’t force them to get tested for FH, but it’s important that they make an informed choice about whether they want to know. That requires good information, and we provide it to them. It takes time, and we make time for it; our consultation times for this group are longer.”

Family History Research

Once an index patient has been identified—the first person in a family diagnosed with FH—family screening follows. That process isn’t going smoothly yet, according to Ted. “Even in our case, not all family members of index patients come forward for information and genetic testing. I’ve noticed that certainly not all young people with FH are receiving treatment. Together with LEEFH, we want to focus on this so that we can identify as many people as possible. This is essential, because it can save their lives. To do this, we need to collaborate with primary care physicians so that they are aware that high cholesterol can indicate FH and refer these people to us. This year, we will develop a plan for this together with the primary care physicians.”

Awareness

The collaboration with the LEEFH Foundation comes up a few times; both parties see this as a positive development. “We’re in close contact. We can refer people to LEEFH for information and a testing kit, and we regularly discuss whether we’ve identified everyone within families and what else might be needed,” says Lenneke. When her colleague jokes that the Groene Hart Hospital is now part of the big LEEFH family, she says: “That’s true; there’s a large network in family history care that we can tap into. You don’t just become a LEEFH center; you have to have properly organized care for this group, in collaboration with primary care.”

Ted Koster believes that FH care “needs a community of like-minded people.” “A group of healthcare professionals who understand how important it is to detect and treat FH. People who realize that we need to work to eliminate assumptions like ‘You might have high cholesterol, but you live a healthy lifestyle, so it’s no big deal.’ It is precisely that group you want to screen for a mutation. The people at LEEFH and my colleagues from the other LEEFH centers get that. The big danger is that awareness is still too low. Even when treating older patients with FH. If you have FH yourself, don’t you want to know if your kids have it too? That idea isn’t nearly ingrained enough yet. Behind every person with FH is an entire family that we want to help.”