Decision Aid Guides Patients Through Familial Hypercholesterolemia Treatment Choices

Researchers from the Mayo Clinic have developed an online decision aid prototype to support treatment-related discussion between providers and patients with familial hypercholesterolemia. They described the work-in-progress at the Scientific Sessions 2018 in Chicago, Illinois.

“Patients with familial hypercholesterolemia may not reach target low-density lipoprotein (LDL) cholesterol levels despite maximally tolerated statin (± ezetimibe) therapy,” researchers explained in the session abstract. “The American Heart Association scientific statement on familial hypercholesterolemia highlighted the need for developing decision aids to facilitate shared decision making regarding additional therapy, including PCSK9 inhibitors.”

To develop a decision aid that is user-centered, researchers analyzed videos of encounters between patients with familial hypercholesterolemia and healthcare providers to see how decisions concerning lipid-lowering therapy were made. Of the nine recorded encounters, three involved a genetic counselor and six involved a specialist in familiar hypercholesterolemia. 

The resulting prototype aims to explain a patient’s risk of adverse cardiovascular events and therapies that may help. The patient’s 5- and 10-year atherosclerotic cardiovascular disease risk are included in the decision aid, which presents them using phrases such as, “Out of 100 persons like you...”

Therapeutic options covered in the decision aid include watchful waiting, bile acid sequestrants, and PCSK9 inhibitors. The degree of risk reduction, costs, and side effects expected with each option are also addressed.

Researchers said they are currently refining the tool, which will eventually be placed in the electronic health record. —Jolynn Tumolo