Comparative aspects of the care of familial hypercholesterolemia in the “Ten Countries Study”
Journal
Journal of Clinical Lipidology
Journal Volume
13
Journal Issue
2
Pages
287-300
Date Issued
2019
Author(s)
Pang J.
Chan D.C.
Hu M.
Muir L.A.
Kwok S.
Charng M.-J.
Florkowski C.M.
George P.M.
Lin J.
Loi D.D.
Marais A.D.
Nawawi H.M.
Gonzalez-Santos L.E.
Truong T.H.
Santos R.D.
Soran H.
Tomlinson B.
Yamashita S.
Ademi Z.
Watts G.F.
Abstract
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 (? = 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 (? = 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
Subjects
Asia-pacific region; Facilities; Familial hypercholesterolemia; Health care; Services; Southern hemisphere
Other Subjects
ezetimibe; low density lipoprotein cholesterol; nicotinic acid; probucol; proprotein convertase 9; resin; low density lipoprotein cholesterol; PCSK9 protein, human; proprotein convertase 9; serine proteinase inhibitor; Article; Australia; Brazil; China; cost effectiveness analysis; familial hypercholesterolemia; genetic screening; health care cost; Hong Kong; human; Japan; lipoprotein apheresis; Malaysia; medical specialist; New Zealand; non invasive procedure; Philippines; priority journal; public expenditure; questionnaire; risk assessment; screening test; South Africa; Taiwan; United Kingdom; Viet Nam; apheresis; blood; cardiovascular disease; comparative study; complication; diet therapy; economics; familial hypercholesterolemia; health care delivery; health education; international cooperation; register; reimbursement; Blood Component Removal; Cardiovascular Diseases; Cholesterol, LDL; Delivery of Health Care; Diet Therapy; Health Care Costs; Health Education; Humans; Hyperlipoproteinemia Type II; Insurance, Health, Reimbursement; Internationality; Proprotein Convertase 9; Registries; Risk Assessment; Serine Proteinase Inhibitors
Publisher
Elsevier Ltd
Type
journal article