OLVG now also a LEEFH center: Yvette Henstra discusses her work

Yvette Henstra has been a nurse specialist in vascular medicine at the OLVG since 2005. She is also an FH consultant for LEEFH. She tells us about her work as a nurse specialist and FH consultant. "In 2005, I mainly saw patients for secondary prevention, i.e., after a stroke or TIA or with peripheral arterial disease."

After a nurse specialist joined the neurology department, the patient population shifted to include people with high blood pressure, elevated cholesterol, or thrombosis. She applied the experience she gained with patients who came for secondary prevention to the treatment of patients with (familial) elevated lipids. And recently, the OLVG has also become a LEEFH center of expertise for patients with proven familial hypercholesterolemia (FH). "We had been treating this group for years, so it was only natural." Yvette has two colleagues, one nurse specialist and one nurse practitioner in training. We all treat patients with elevated cholesterol.

During my consultation hours, I first explain to patients with elevated cholesterol that there is a difference between proven FH and "elevated cholesterol that often occurs within a family." I inform them about the possibility of using DNA material and also discuss the consequences of a positive test (stricter target values, low threshold for treatment, maintaining an even stricter lifestyle). If a patient tests positive, he or she will be treated and guided. An important part of this is ensuring that patients have sufficient knowledge about cholesterol and lifestyle.

Collaboration in family research

When the population screening program ended in late 2013, the LEEFH foundation was established and asked various hospitals to collaborate on family screening, including the OLVG. Yvette believes it is a great pity that the population screening program has been discontinued: it was a very efficient way of identifying people with FH. There are now more than 30,000 people walking around with FH who are unaware of it. I find that very sad. It is well known that these people can develop cardiovascular disease at a very young age. People with FH who are not treated often do not live past the age of 60. And that's despite the fact that in most cases the condition is very treatable.

I tell the patient how family members can request a DNA test kit and have it sent to them so they can be tested. I give the best advice I can, but ultimately it is up to the family to decide what to do with it. For me as a nurse specialist, it is very important to seek cooperation. Not only internally within the hospital, but especially with general practitioners and, above all, practice assistants. I think there is still much to be gained in detecting people with FH if we seek cooperation.

Treatment for FH

In addition to advice on healthy lifestyle choices (quitting smoking, healthy eating, exercise), advice on appropriate medication also plays an important role.

Yvette does not see young children during her consultation hours, but they are there. We see them from the age of 18, and before that they are treated by a pediatrician. Meeike Kusters, a pediatrician at OLVG, sees a number of children with FH during her consultation hours.

Yvette: "Children generally start taking medication at the age of eight, but if necessary, this can be earlier in cases of extremely high cholesterol levels. From around the age of eight, the body can often get used to it. It also appears that children are very compliant with treatment. If parents forget to give the medication, the child will remember to take it themselves."

Yvette and Meeike have decided to start joint consultation hours in the future. After all, children with FH have at least one parent with FH. This will ensure that these families receive the care they need. It will also make the transition to the adult clinic less daunting when a child reaches the age of 18 and is 'transferred' to Yvette's adult clinic.