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CASCADE-FH Registry: Patients lack awareness of familial hypercholesterolemia
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SAN DIEGO — Nearly half of patients enrolled in a study evaluating familial hypercholesterolemia failed to understand how this condition could negatively impact their health, according to a poster presented here at the 2015 American College of Cardiology Scientific Sessions.
Emily Claire O’Brien, PhD, medical instructor at the Duke Clinical Research Institute at Duke Medical Center in Durham, N.C., and colleagues noted that although an estimated 600,000 individuals in the US have familial hypercholesterolemia, fewer than 10% of these individuals have been officially diagnosed.
The CASCADE-FH Registry enrolls patients with familial hypercholesterolemia who have been formally diagnosed by a clinical provider, with some data abstracted from medical records. Patients may also go online and self-enroll in the registry. “The objectives of the registry are to increase FH awareness, characterize trends in treatment and to monitor clinical outcomes over time,” O’Brien said. “Patients can enroll from anywhere in the country.”
The researchers aim to capture follow-up data annually.
The current analysis included 1,390 patients enrolled at clinical sites and 215 enrolled online.
O’Brien noted that just 74.1% of the study population was currently being treated with statins, and just 55.8% of those patients were being treated with high intensity statins. “This definitely represents an area for improvement,” she said.
The researchers obtained data regarding whether patients completely understand a number of risks and variables associated with familial hypercholesterolemia. Results indicated that 53.7% of respondents understood how this condition could negatively impact health, while 56.9% understood the current medication regimen and only 34.2% were aware of available treatment options. Less than half of patients understood how familial hypercholesterolemia increases heart disease risk (43.1%) or where more information about this condition can be obtained (33.8%), according to the poster.
“We see these findings as pretty striking opportunities for education and outreach,” O’Brien said.
Only 36% of online patients reported being highly satisfied at the way their condition was being treated, while 30% were mostly satisfied. Twenty percent were somewhat dissatisfied and 6% were mostly dissatisfied with the way their familial hypercholesterolemia was being treated.
“This is baseline data, but we are excited to see the longitudinal data to see how patterns change over time, particularly with the availability of new agents and how that affects clinical outcomes,” O’Brien said. – by Rob Volansky
Reference:
O’Brien EC, et al. Poster 1107-107. Presented at: American College of Cardiology Scientific Sessions: March 14-16, 2015; San Diego.
Disclosure: The researchers report that the study was funded by Aegerion, Amgen, AstraZeneca, Regeneron and Sanofi.
Perspective
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Kim Allan Williams, MD
This is foundational to trying to improve the outcomes of patients with familial hyperlipidemia. It actually is a novel partnership between the people who are doing the research and the patients themselves. They are offering themselves up to get better information. Also, because it is a familial disease, their families will benefit. I am glad that these researchers have initiated this, and I look forward to the studies that come out of it that will inform us for years to come.
We have seen these partnerships with disease-oriented communities, such as in muscular dystrophy. Anything that has a bad phenotype and a solidly known genotype should end up in a registry like this over time. This is likely where we are headed and I think it is a positive move.
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