Overview of the current status of familial hypercholesterolaemia care in over 60 countries - The EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC)
EAS Familial Hypercholesterolaemia Studies Collaboration, Antonio J Vallejo-Vaz, Martina De Marco, Christophe A T Stevens, Asif Akram, Tomas Freiberger, G Kees Hovingh, John J P Kastelein, Pedro Mata, Frederick J Raal, Raul D Santos, Handrean Soran, Gerald F Watts, Marianne Abifadel, Carlos A Aguilar-Salinas, Mutaz Al-Khnifsawi, Fahad A AlKindi, Fahad Alnouri, Rodrigo Alonso, Khalid Al-Rasadi, Ahmad Al-Sarraf, Tester F Ashavaid, Christoph J Binder, Martin P Bogsrud, Mafalda Bourbon, Eric Bruckert, Krzysztof Chlebus, Pablo Corral, Olivier Descamps, Ronen Durst, Marat Ezhov, Zlatko Fras, Jacques Genest, Urh Groselj, Mariko Harada-Shiba, Meral Kayikcioglu, Katarina Lalic, Carolyn S P Lam, Gustavs Latkovskis, Ulrich Laufs, Evangelos Liberopoulos, Jie Lin, Vincent Maher, Nelson Majano, A David Marais, Winfried März, Erkin Mirrakhimov, André R Miserez, Olena Mitchenko, Hapizah M Nawawi, Børge G Nordestgaard, György Paragh, Zaneta Petrulioniene, Belma Pojskic, Arman Postadzhiyan, Ashraf Reda, Željko Reiner, Wilson E Sadoh, Amirhossein Sahebkar, Abdullah Shehab, Aleksander B Shek, Mario Stoll, Ta-Chen Su, Tavintharan Subramaniam, Andrey V Susekov, Phivos Symeonides, Myra Tilney, Brian Tomlinson, Thanh-Huong Truong, Alexandros D Tselepis, Anne Tybjærg-Hansen, Alejandra Vázquez-Cárdenas, Margus Viigimaa, Branislav Vohnout, Elisabeth Widén, Shizuya Yamashita, Maciej Banach, Dan Gaita, Lixin Jiang, Lennart Nilsson, Lourdes E Santos, Heribert Schunkert, Lale Tokgözoğlu, Josip Car, Alberico L Catapano, Kausik K Ray, EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC) Investigators, EAS Familial Hypercholesterolaemia Studies Collaboration, Antonio J Vallejo-Vaz, Martina De Marco, Christophe A T Stevens, Asif Akram, Tomas Freiberger, G Kees Hovingh, John J P Kastelein, Pedro Mata, Frederick J Raal, Raul D Santos, Handrean Soran, Gerald F Watts, Marianne Abifadel, Carlos A Aguilar-Salinas, Mutaz Al-Khnifsawi, Fahad A AlKindi, Fahad Alnouri, Rodrigo Alonso, Khalid Al-Rasadi, Ahmad Al-Sarraf, Tester F Ashavaid, Christoph J Binder, Martin P Bogsrud, Mafalda Bourbon, Eric Bruckert, Krzysztof Chlebus, Pablo Corral, Olivier Descamps, Ronen Durst, Marat Ezhov, Zlatko Fras, Jacques Genest, Urh Groselj, Mariko Harada-Shiba, Meral Kayikcioglu, Katarina Lalic, Carolyn S P Lam, Gustavs Latkovskis, Ulrich Laufs, Evangelos Liberopoulos, Jie Lin, Vincent Maher, Nelson Majano, A David Marais, Winfried März, Erkin Mirrakhimov, André R Miserez, Olena Mitchenko, Hapizah M Nawawi, Børge G Nordestgaard, György Paragh, Zaneta Petrulioniene, Belma Pojskic, Arman Postadzhiyan, Ashraf Reda, Željko Reiner, Wilson E Sadoh, Amirhossein Sahebkar, Abdullah Shehab, Aleksander B Shek, Mario Stoll, Ta-Chen Su, Tavintharan Subramaniam, Andrey V Susekov, Phivos Symeonides, Myra Tilney, Brian Tomlinson, Thanh-Huong Truong, Alexandros D Tselepis, Anne Tybjærg-Hansen, Alejandra Vázquez-Cárdenas, Margus Viigimaa, Branislav Vohnout, Elisabeth Widén, Shizuya Yamashita, Maciej Banach, Dan Gaita, Lixin Jiang, Lennart Nilsson, Lourdes E Santos, Heribert Schunkert, Lale Tokgözoğlu, Josip Car, Alberico L Catapano, Kausik K Ray, EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC) Investigators
Abstract
Background and aims: Management of familial hypercholesterolaemia (FH) may vary across different settings due to factors related to population characteristics, practice, resources and/or policies. We conducted a survey among the worldwide network of EAS FHSC Lead Investigators to provide an overview of FH status in different countries.
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.
Keywords: FHSC; Familial hypercholesterolaemia; Primary dyslipidaemia.
Copyright © 2018 Elsevier B.V. All rights reserved.
Source: PubMed