Comparative aspects of the care of familial hypercholesterolemia in the “Ten Countries Study”

• Main Authors: Ademi, Z. (Author), Chan, D.C (Author), Charng, M.-J (Author), Florkowski, C.M (Author), George, P.M (Author), Gonzalez-Santos, L.E (Author), Hu, M. (Author), Kwok, S. (Author), Lin, J. (Author), Loi, D.D (Author), Marais, A.D (Author), Muir, L.A (Author), Nawawi, H.M (Author), Pang, J. (Author), Santos, R.D (Author), Soran, H. (Author), Su, T.-C (Author), Tomlinson, B. (Author), Truong, T.H (Author), Watts, G.F (Author), Yamashita, S. (Author)
• Format: Article
• Language: English
• Published: Elsevier Ltd 2019
• Subjects: apheresis; Article; Asia-pacific region; Australia; blood; Blood Component Removal; Brazil; cardiovascular disease; Cardiovascular Diseases; China; Cholesterol, LDL; comparative study; complication; cost effectiveness analysis; Delivery of Health Care; diet therapy; Diet Therapy; economics; ezetimibe; Facilities; familial hypercholesterolemia; Familial hypercholesterolemia; genetic screening; Health care; health care cost; Health Care Costs; health care delivery; health education; Health Education; Hong Kong; human; Humans; Hyperlipoproteinemia Type II; Insurance, Health, Reimbursement; international cooperation; Internationality; Japan; lipoprotein apheresis; low density lipoprotein cholesterol; Malaysia; medical specialist; New Zealand; nicotinic acid; non invasive procedure; PCSK9 protein, human; Philippines; priority journal; probucol; proprotein convertase 9; Proprotein Convertase 9; public expenditure; questionnaire; register; Registries; reimbursement; resin; risk assessment; Risk Assessment; screening test; serine proteinase inhibitor; Serine Proteinase Inhibitors; Services; South Africa; Southern hemisphere; Taiwan; United Kingdom; Viet Nam
• Online Access: View Fulltext in Publisher; View in Scopus
• ISBN: 19332874 (ISSN)
• ISSN: 19332874 (ISSN)
• DOI: 10.1016/j.jacl.2019.01.009

Background: There is a lack of information on the health care of familial hypercholesterolemia (FH). Objective: The objective of this study was to compare the health care of FH in countries of the Asia-Pacific region and Southern Hemisphere. Methods: A series of questionnaires were completed by key opinion leaders from selected specialist centers in 12 countries concerning aspects of the care of FH, including screening, diagnosis, risk assessment, treatment, teaching/training, and research; the United Kingdom (UK)was used as the international benchmark. Results: The estimated percentage of patients diagnosed with the condition was low (overall <3%)in all countries, compared with ∼15% in the UK. Underdetection of FH was associated with government expenditure on health care (ϰ = 0.667, P <.05). Opportunistic and systematic screening methods, and the Dutch Lipid Clinic Network criteria were most commonly used to detect FH; genetic testing was infrequently used. Noninvasive imaging of coronary calcium and/or carotid plaques was underutilized in risk assessment. Patients with FH were generally not adequately treated, with <30% of patients achieving guideline recommended low-density lipoprotein cholesterol targets on conventional therapies. Treatment gaps included suboptimal availability and use of lipoprotein apheresis and proprotein convertase subtilsin-kexin type 9 inhibitors. A deficit of FH registries, training programs, and publications were identified in less economically developed countries. The demonstration of cost-effectiveness for cascade screening, genetic testing, and specialized treatments were significantly associated with the availability of subsidies from the health care system (ϰ = 0.571–0.800, P <.05). Conclusion: We identified important gaps across the continuum of care for FH, particularly in less economically developed countries. Wider implementation of primary and pediatric care, telehealth services, patient support groups, education/training programs, research activities, and health technology assessments are needed to improve the care of patients with FH in these countries. © 2019 National Lipid Association