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Arch Intern Med. 2003 Jan 13;163(1):65-8.

Long-term compliance with lipid-lowering medication after genetic screening for familial hypercholesterolemia.

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Foundation for the Identification of Persons With Inherited Hypercholesterolemia and Department of Vascular Medicine, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands.



Familial hypercholesterolemia is a common lipid disorder that predisposes to premature cardiovascular disease. Lipid-lowering treatment of affected individuals is widely advocated, and maximum benefit can be obtained if medication is started early. A screening program for familial hypercholesterolemia is ongoing in the Netherlands since 1994. To assess the extent of treatment and therapy compliance, patients were followed up for 2 years after the diagnosis was established.


Data were obtained by questionnaire. The 747 patients with familial hypercholesterolemia participating in the study were from the general community, and 62.4% were not receiving cholesterol-lowering medication.


The overall percentage of treated patients had risen from 37.6% at screening to 92.5% 1 year later and then decreased to 85.9% 2 years after screening. During follow-up, 6.4% of patients discontinued their medication and 12.0% of untreated patients never started medication for various reasons, but in the majority of cases as advised by their own physicians. The mean reduction in low-density lipoprotein cholesterol levels in previously untreated patients was 30.1% (from 219 to 153 mg/dL [5.7 to 4.0 mmol/L]). For those already receiving treatment, an additional reduction of 10.3% (from 195 to 175 mg/dL [5.0 to 4.5 mmol/L]) was obtained.


Most patients were receiving treatment 2 years after identification and had a positive attitude toward the screening program. However, the reduction of cholesterol levels still did not meet the internationally accepted goals of treatment. This underscores the fact that additional education is required to improve the treatment of individuals with familial hypercholesterolemia.

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