1. Ross, Joyce MSN, CRNP, CS, CLS, ANP, FPCNA, FNLA

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In 2012, a group of people with familial hypercholesterolemia (FH) led an effort to establish the FH Foundation as the first patient organization in the United States to focus on the needs of people living with the disease. The mission of the FH Foundation is to help more people learn about FH through education, advocacy, and research-ultimately helping them to get proper and early diagnosis and treatment. And a central consideration in the effort to raise awareness of FH is the important role that cardiovascular nurses can play in that effort.


High cholesterol is among the most common global health issues, affecting 71 million people in the United States alone.1 Familial hypercholesterolemia is a genetic condition that often causes dangerously high levels of bad cholesterol to build up in the blood, owing to inherited genes that impair the liver's ability to clear cholesterol. Without treatment, the risk of developing premature cardiovascular disease is 20 times higher in people with FH than in the general population.2 People with FH in their 40s often have narrowing of the arteries similar to that found in a 70-year-old.3 According to the National Lipid Association, only about 20% of those with FH are diagnosed, and of that group, many are not aggressively treated.4


A focus group consisting of members from the Preventive Cardiovascular Nurses Association met last year during the association's annual symposium in Florida to discuss efforts to expand community awareness of FH. According to their clinical experience, there continue to be major challenges in educating patients about FH and implementing strategies to improve patient education and quality of care related to diagnosis and treatment. An extended summary of the discussion is available for download on the Journal of Cardiovascular Nursing Web site at,%20Educating%20Patie. Preventive Cardiovascular Nurses Association members indicated that there may be significant opportunities for both cardiac and primary care nurses to play major roles in expanding awareness of FH and in managing FH patients. They highlighted a need to educate more healthcare providers about FH, including the best strategies to counsel patients and families. Resources that can help address this need are available through The FH Foundation ( and the National Lipid Association (




1. CDC. Vital signs: prevalence, treatment, and control of high levels of low-density lipoprotein cholesterol. United States, 1999-2002 and 2005-2008. MMWR. 2011;60(4):109-114.[Context Link]


2. Huijgen R, Vissers MN, Defesche JC, et al. Familial hypercholesterolemia: current treatment and advances in management. Expert Rev Cardiovasc Ther. 2008;6:567-81. doi: 10.1586/14779072.6.4.567. [Context Link]


3. De Groot E, Hovingh K, Wiegman A, et al. Measurement of arterial wall thickness as a surrogate marker for atherosclerosis. Circulation. 2004;109(suppl III):III33-III38. [Context Link]


4. Goldberg AC, Hopkins PN, Toth PP, et al. Familial hypercholesterolemia: screening, diagnosis and management of pediatric and adult patients: clinical guidance from the National Lipid Association Expert Panel on Familial Hypercholesterolemia. J Clin Lipidol. 2011;5:S1-S8. [Context Link]