Overview of the current status of familial hypercholesterolaemia care in over 60 countries - The EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC).
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EAS Familial Hypercholesterolaemia Studies Collaboration, Vallejo-Vaz Antonio J, De Marco Martina, Stevens Christophe A T, Akram Asif, Freiberger Tomas, Hovingh G Kees, Kastelein John J P, Mata Pedro, Raal Frederick J, Santos Raul D, Soran Handrean, Watts Gerald F, Abifadel Marianne, Aguilar-Salinas Carlos A, Al-Khnifsawi Mutaz, AlKindi Fahad A, Alnouri Fahad, Alonso Rodrigo, Al-Rasadi Khalid, Al-Sarraf Ahmad, Ashavaid Tester F, Binder Christoph J, Bogsrud Martin P, Bourbon Mafalda, Bruckert Eric, Chlebus Krzysztof, Corral Pablo, Descamps Olivier, Durst Ronen, Ezhov Marat, Fras Zlatko, Genest Jacques, Groselj Urh, Harada-Shiba Mariko, Kayikcioglu Meral, Lalic Katarina, Lam Carolyn S P, Latkovskis Gustavs, Laufs Ulrich, Liberopoulos Evangelos, Lin Jie, Maher Vincent, Majano Nelson, Marais A David, März Winfried, Mirrakhimov Erkin, Miserez André R, Mitchenko Olena, Nawawi Hapizah M, Nordestgaard Børge G, Paragh György, Petrulioniene Zaneta, Pojskic Belma, Postadzhiyan Arman, Reda Ashraf, Reiner Željko, Sadoh Wilson E, Sahebkar Amirhossein, Shehab Abdullah, Shek Aleksander B, Stoll Mario, Su Ta-Chen, Subramaniam Tavintharan, Susekov Andrey V, Symeonides Phivos, Tilney Myra, Tomlinson Brian, Truong Thanh-Huong, Tselepis Alexandros D, Tybjærg-Hansen Anne, Vázquez-Cárdenas Alejandra, Viigimaa Margus, Vohnout Branislav, Widén Elisabeth, Yamashita Shizuya, Banach Maciej, Gaita Dan, Jiang Lixin, Nilsson Lennart, Santos Lourdes E, Schunkert Heribert, Tokgözoğlu Lale, Car Josip, Catapano Alberico L, Ray Kausik K, EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC) Investigators
Аннотация
METHODS: Lead Investigators from countries formally involved in the EAS FHSC by mid-May 2018 were invited to provide a brief report on FH status in their countries, including available information, programmes, initiatives, and management.
RESULTS: 63 countries provided reports. Data on FH prevalence are lacking in most countries. Where available, data tend to align with recent estimates, suggesting a higher frequency than that traditionally considered. Low rates of FH detection are reported across all regions. National registries and education programmes to improve FH awareness/knowledge are a recognised priority, but funding is often lacking. In most countries, diagnosis primarily relies on the Dutch Lipid Clinics Network criteria. Although available in many countries, genetic testing is not widely implemented (frequent cost issues). There are only a few national official government programmes for FH. Under-treatment is an issue. FH therapy is not universally reimbursed. PCSK9-inhibitors are available in ∼2/3 countries. Lipoprotein-apheresis is offered in ∼60% countries, although access is limited.
CONCLUSIONS: FH is a recognised public health concern. Management varies widely across countries, with overall suboptimal identification and under-treatment. Efforts and initiatives to improve FH knowledge and management are underway, including development of national registries, but support, particularly from health authorities, and better funding are greatly needed.