“We have invested time in discussing with general practitioners that sky-high cholesterol can be a sign of FH.”

Roeland Huijgen and Anneke van Paassen are both vascular medicine specialists at Spaarne Gasthuis hospital. They are strong advocates of a robust network for FH care, both within their own hospital and beyond. General practitioners play an important role in this.

Roeland Huijgen has been focusing on FH since 2006. He conducted research into the Dutch approach to the detection of familial hypercholesterolemia (FH) by the StOEH (Foundation for the Detection of Hereditary Hypercholesterolemia), on which he obtained his PhD in 2012. Thanks to the StOEH, nearly 30,000 (of the 60,000) patients with FH were detected in twenty years. In 2014, the StOEH transferred its accumulated knowledge and experience to the LEEFH Foundation. What does this Dutch approach entail? "The Netherlands is the frontrunner in terms of the number of people with FH detected," says Roeland. "In its best years, the StOEH visited almost 6,000 people per year, which was very effective. Fortunately, LEEFH has taken over this work. Although visiting people at home and informing them, as the StOEH did, remains the most effective method, the Netherlands still leads the way in terms of the number of families identified. That's a good thing, because if you have FH, you need to know about it. This can prevent a lot of suffering caused by cardiovascular disease."

According to Anneke van Paassen, it also helps that attention is paid to this in the training program for vascular physicians. “The specialists who are trained in the Netherlands are steeped in the LEEFH system. Compared to other countries, we have learned much more about FH in our training program. That also benefits detection.”

Top 10

Since last summer, Spaarne Gasthuis has been a LEEFH center. Even before that, the hospital was in the national top 10 for the number of referrals for DNA testing for FH. "Even without the LEEFH label, we were already doing a lot of work to identify index patients, the first person in a family to be diagnosed with FH," says Roeland. This is partly due to contacts and training for general practitioners, explains Anneke. "We have invested a lot of time and attention in discussing that sky-high cholesterol can indicate FH. And that these people can be referred to an internist, even if they do not yet have cardiovascular disease. We have noticed that general practitioners are now more likely to consider FH and consult us. We regularly receive questions such as, 'I have a patient here with high cholesterol, should I refer them? GPs have to know a lot about all sorts of things, which makes specific knowledge about a single disease challenging. We have seen that our training has greatly increased the level of knowledge about FH among general practitioners in our region. This also applies to the cardiologists in our own hospital, who are also readily available to diagnose FH themselves or through us. As a result, the FH network in our region is becoming increasingly well organized."

Complex cases

LEEFH works closely with the Amsterdam University Medical Center (A-UMC). The A-UMC conducts extensive scientific research into FH and the treatment of this hereditary condition. The vascular medicine specialists at Spaarne Gasthuis also have close ties with the A-UMC. Roeland Huijgen: "When we have complex cases, we can turn to them for help. When they are looking for people for a study, they know where to find us. So we had already organized these kinds of benefits of a LEEFH center." So why did the hospital apply for LEEFH center status? "The LEEFH website gets a lot of traffic. People want to know where to go, and as a hospital, you want to be there for them. Being easy to find means we can serve the region better. LEEFH also has good information for patients, which we are happy to use."

Pediatricians

Anneke describes LEEFH as the umbrella under which FH care falls. "This shortens the lines of communication, which is what you want. FH is a highly treatable condition, where you can quite simply eliminate an excessive risk of cardiovascular disease. You have to organize care as effectively as possible. LEEFH plays an important role in this." Because the network is also well organized within the Spaarne Gasthuis hospital, contact with pediatricians has been improved, says Roeland: "We can serve families well, but we realized that we also needed pediatricians in that care. We found two pediatricians who are familiar with FH to be the point of contact for children and their parents. This means that the parents we see do not have to take their children to another center. We know where to find each other within Spaarne, which means we can better help entire families." Anneke believes that LEEFH could play a greater role in the care of children. "I notice that parents sometimes find it difficult to take their children to the pediatrician and start treatment. Some have difficulty giving their children statins. More information is needed in this area."