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. 2018 Oct:277:234-255.
doi: 10.1016/j.atherosclerosis.2018.08.051.

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  1 , Martina De Marco  2 , Christophe A T Stevens  3 , Asif Akram  4 , Tomas Freiberger  5 , G Kees Hovingh  6 , John J P Kastelein  6 , Pedro Mata  7 , Frederick J Raal  8 , Raul D Santos  9 , Handrean Soran  10 , Gerald F Watts  11 , Marianne Abifadel  12 , Carlos A Aguilar-Salinas  13 , Mutaz Al-Khnifsawi  14 , Fahad A AlKindi  15 , Fahad Alnouri  16 , Rodrigo Alonso  17 , Khalid Al-Rasadi  18 , Ahmad Al-Sarraf  19 , Tester F Ashavaid  20 , Christoph J Binder  21 , Martin P Bogsrud  22 , Mafalda Bourbon  23 , Eric Bruckert  24 , Krzysztof Chlebus  25 , Pablo Corral  26 , Olivier Descamps  27 , Ronen Durst  28 , Marat Ezhov  29 , Zlatko Fras  30 , Jacques Genest  31 , Urh Groselj  32 , Mariko Harada-Shiba  33 , Meral Kayikcioglu  34 , Katarina Lalic  35 , Carolyn S P Lam  36 , Gustavs Latkovskis  37 , Ulrich Laufs  38 , Evangelos Liberopoulos  39 , Jie Lin  40 , Vincent Maher  41 , Nelson Majano  42 , A David Marais  43 , Winfried März  44 , Erkin Mirrakhimov  45 , André R Miserez  46 , Olena Mitchenko  47 , Hapizah M Nawawi  48 , Børge G Nordestgaard  49 , György Paragh  50 , Zaneta Petrulioniene  51 , Belma Pojskic  52 , Arman Postadzhiyan  53 , Ashraf Reda  54 , Željko Reiner  55 , Wilson E Sadoh  56 , Amirhossein Sahebkar  57 , Abdullah Shehab  58 , Aleksander B Shek  59 , Mario Stoll  60 , Ta-Chen Su  61 , Tavintharan Subramaniam  62 , Andrey V Susekov  63 , Phivos Symeonides  64 , Myra Tilney  65 , Brian Tomlinson  66 , Thanh-Huong Truong  67 , Alexandros D Tselepis  68 , Anne Tybjærg-Hansen  69 , Alejandra Vázquez-Cárdenas  70 , Margus Viigimaa  71 , Branislav Vohnout  72 , Elisabeth Widén  73 , Shizuya Yamashita  74 , Maciej Banach  75 , Dan Gaita  76 , Lixin Jiang  77 , Lennart Nilsson  78 , Lourdes E Santos  79 , Heribert Schunkert  80 , Lale Tokgözoğlu  81 , Josip Car  82 , Alberico L Catapano  83 , Kausik K Ray  3 ; EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC) Investigators
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Free article

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 et al. Atherosclerosis. 2018 Oct.
Free article

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.

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