Misperceptions and management of LDL-cholesterol in secondary prevention of patients with familial hypercholesterolemia in cardiology practice: Real-life evidence from the EPHESUS registry

• Published in: Journal of clinical lipidology 2023-11, Vol.17 (6), p.732-742
• Main Authors: Kayıkcioglu, Meral, Başaran, Özcan, Doğan, Volkan, Mert, Kadir Uğur, Mert, Gurbet Özge, Özdemir, İbrahim Halil, Rencüzoğulları, İbrahim, Karadeniz, Fatma Özpamuk, Tekinalp, Mehmet, Aşkın, Lütfü, Demirelli, Selami, Gencer, Erkan, Bekar, Lütfü, Aktaş, Müjdat, Resulzade, Mübariz Murat, Kalçık, Macit, Aksan, Gökhan, Cinier, Göksel, Akay, Kadriye Halli, Pekel, Nihat, Utku Şenol, Demir, Vahit, İnci, Sinan, Derviş, Emir, Özlek, Bülent, Özlek, Eda, Çelik, Oğuzhan, Çil, Cem, Biteker, Murat
• Format: Article
• Language: English
• Subjects: Anticholesteremic Agents - therapeutic use; Atherosclerosis - complications; Atherosclerosis - drug therapy; Atherosclerosis - prevention & control; Atherosclerotic cardiovascular disease; Cardiology; Cholesterol, LDL; Familial hypercholesterolemia; Humans; Hydroxymethylglutaryl-CoA Reductase Inhibitors - therapeutic use; Hyperlipoproteinemia Type II - complications; Hyperlipoproteinemia Type II - drug therapy; LDL-cholesterol; Lipid-lowering therapy; Media coverage; Registries; Secondary Prevention
• ISSN: 1933-2874; 1876-4789
• DOI: 10.1016/j.jacl.2023.09.013

•In real life, vast majority of FH patients with established ASCVD are undertreated in cardiology outpatient clinics•The proportion of FH patients receiving high intensity statin therapy is very low•Ezetimibe and PCSK9 inhibitor use is almost non-existent•Drug discontinuation rates are notably high and are mostly media-related•Side effects very rarely cause cessation of LLT.•Patients’ knowledge about high cholesterol and its treatment is low. Familial hypercholesterolemia (FH) is a common inherited disease, leading to premature atherosclerotic cardiovascular disease (ASCVD) due to elevated low-density lipoprotein cholesterol (LDL-C) levels. Achieving LDL-C goals is extremely important for preventing the complications of this fatal disease. We evaluated the management of FH patients with ASCVD in cardiology practice. We analyzed patients with ASCVD from the nationwide EPHESUS registry, which was conducted in 40 cardiology outpatient clinics, and compared those with and without FH. Of the 1482 consecutively enrolled patients with ASCVD, 618 (41.7%) had FH, among which 455 were categorized as 'Possible FH' and 163 as 'Probable or Definite FH'. Proposed LDL-C goals were not attained in more than 90% of the patients with FH. The proportion of those on statin therapy was 77% for possible and 91% for probable or definite FH, whereas 34.2 % and 59.4% were in use of high-intensity statins, respectively. None of the patients were on PCSK-9 inhibitors, and only 2 used ezetimibe. Adverse media coverage was the most common cause of statin discontinuation (32.5% in 'possible FH' and 45.7% in 'probable/definite FH'). The negative impact of media in the decision to stop lipid lowering therapy (LLT) was increasing with education level. In real life most of the FH patients with ASCVD are undertreated in cardiology practice regarding statin dosing and combined LLT. Drug discontinuation rates are notably high and are mostly media-related, and side effects very rarely cause cessation of LLT. Urgent measures are needed to increase the awareness of FH among healthcare providers and patients and to develop improved treatment strategies aimed at preventing the complications of FH. [Display omitted]