More Awareness of Familial Hypercholesterolemia and Severe Dyslipidemia, yet Statin Use Remains Low

Even though patients with familial hypercholesterolemia and severe dyslipidemia often undergo cholesterol screening and seem to be aware of their conditions, less than half of them are on statin therapy, according to new registry data.

People with LDL cholesterol levels above 190 mg/dL, many of whom have genetically inherited familial hypercholesterolemia (FH), are typically at a five to 13 times increased risk of cardiovascular events and early mortality compared with the general population, lead study author Emily Bucholz, MD, PhD (Boston Children’s Hospital, MA), told TCTMD. But prior studies of these patient groups have only included limited populations of those already admitted to ambulatory care centers or in treatment at lipid clinics.

“We suspected that the rate of statin use was going to be substantially lower if you looked at the overall general population, and that [it] would provide even further motivation for increased outreach [and] education both at the patient and physician level around who and who should not be prescribed statins and [increase] awareness,” she said.

Among 42,471 patients from the National Health and Nutrition Examination Survey (NHANES), weighted to represent 212 million American adults, Bucholz and colleagues found that 6.6% had severe dyslipidemia. An estimated 1 million of these individuals had definite/probable FH. While more than 80% of these people were screened for and aware of their high cholesterol between 1999 and 2014, statin prescription rates were low—52.3% in those with FH and 37.6% in those with severe dyslipidemia. Further, of those on statins, high-intensity statins were used in only 30.3% of FH and 37.4% of severe dyslipidemia patients.

While the prevalence of statin use increased overall, the rate among severe dyslipidemia patients increased only from 29.4% in 1999-2000 to 47.7% in 2013-2014.

Lastly, younger patients seemed to fare worse than older adults, with only 13% of those aged 20-39 years on a documented statin despite 62% and 64% of them, respectively, reporting cholesterol screening and awareness.

The results were published online Monday ahead of print in Circulation.

A ‘Multifactorial’ Problem

Bucholz said she wasn’t so much surprised by these results as “a little alarmed” at how low the statin prescription rates turned out to be. “Certainly [there is] much room for improvement in terms of getting these patients onto statins and getting them on appropriate treatment in order to decrease their risk of cardiovascular events,” she said. “The bottom line is that all of these adults that we examined really should be on a statin, and not only that, they should be on a high-intensity statin.”

Commenting on the study for TCTMD, Joshua Knowles, MD, PhD (Stanford Health Care, Stanford, CA), agreed that he was “disappointed” with the findings. But the reason for the problem is “multifactorial,” Knowles suggested, with “a combination of patient and physician preference, misinformation, not understanding risks and benefits, [and] systematic failures by healthcare systems to institute policies and procedures that would ensure better uptake of medications” all playing roles. “You can't put your finger on just one thing.”

Bucholz also noted that patients in their study not on statins were often uninsured and did not have a usual source of care, such as a hospital or primary care clinic. This “makes sense, but also kind of gives us a little bit of insight as to how we should be doing outreach,” she said, specifying that future efforts should be community-based.

With regard to the finding that younger patients seem to be missing out on statin therapy, Bucholz said this is likely due to both physician and patient biases that this cohort is “invincible” and hasn’t seen “any kind of long-term side effects” from their decisions or genetics thus far. “We like to think that we'll try some behavioral modifications or lifestyle modifications in these younger patients . . . before initiating statins, when really the guidelines universally say that we should be putting these patients on statins automatically,” she said. “We know that it starts early and it's a vicious cycle.”

The eye does not see what the mind does not know, and so physicians are not aware of it, they are not looking for it, they are not screening for it, [and] they are not screening families for it. Joshua Knowles

Broadly speaking, patients are also biased against medications, especially statins, Knowles said. “[Hypercholesterolemia] is a condition for which there's no symptom. You don't feel bad because you have a high LDL. You feel bad if you have a heart attack. And so the idea that you're going to have to take a lifelong medicine to reduce your risk when you're not even feeling bad can be a challenge, and so educating people about the risks and benefits are really important,” he stressed.

With FH patients specifically, who have an even higher risk of cardiovascular events and death, the biggest problem is that the “condition is so underrecognized,” Knowles continued. “The eye does not see what the mind does not know, and so physicians are not aware of it, they are not looking for it, they are not screening for it, [and] they are not screening families for it.”

Given the “undeniable evidence for the utility” of statins, he said future research should include implementation studies that address the questions of systematically improving programs to encourage cascade screening of families, recognizing FH, and incentivizing patients and providers to adhere to guideline-based therapies.

The takeaway from this for patients, Bucholz said, is that “if you know that you have severely elevated cholesterol or that you have a strong family risk of elevated cholesterol or you yourself have had personal events such as stroke, heart attack, heart failure, diabetes, any of those types of risk factors, it's really worth a discussion with your physician to know what your cholesterol levels are and to kind of advocate for yourself to be on a statin.” For clinicians, it’s “overcoming any biases about starting statins and recognizing who these high-risk patients are and recognizing that they are going to need early initiation of statins in the long term.”