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

Jing Pang, Dick C. Chan, Miao Hu, Lauretta A. Muir, See Kwok, Min Ji Charng, Christopher M. Florkowski, Peter M. George, Jie Lin, Do Doan Loi, A. David Marais, Hapizah M. Nawawi, Lourdes E. Gonzalez-Santos, Ta Chen Su, Thanh Huong Truong, Raul D. Santos, Handrean Soran, Brian Tomlinson, Shizuya Yamashita, Zanfina Ademi & 1 others Gerald F. Watts

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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 (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.

Original languageEnglish
Pages (from-to)287-300
JournalJournal of Clinical Lipidology
Volume13
Issue number2
Early online date25 Jan 2019
DOIs
Publication statusPublished - Apr 2019

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Hyperlipoproteinemia Type II
Delivery of Health Care
Genetic Testing
Education
Developing Countries
Proprotein Convertases
Benchmarking
Biomedical Technology Assessment
Blood Component Removal
Continuity of Patient Care
Telemedicine
Self-Help Groups
Therapeutics
Health Expenditures
Research
LDL Cholesterol
Lipoproteins
Cost-Benefit Analysis
Registries
Publications

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Pang, Jing ; Chan, Dick C. ; Hu, Miao ; Muir, Lauretta A. ; Kwok, See ; Charng, Min Ji ; Florkowski, Christopher M. ; George, Peter M. ; Lin, Jie ; Loi, Do Doan ; Marais, A. David ; Nawawi, Hapizah M. ; Gonzalez-Santos, Lourdes E. ; Su, Ta Chen ; Truong, Thanh Huong ; Santos, Raul D. ; Soran, Handrean ; Tomlinson, Brian ; Yamashita, Shizuya ; Ademi, Zanfina ; Watts, Gerald F. / Comparative aspects of the care of familial hypercholesterolemia in the “Ten Countries Study”. In: Journal of Clinical Lipidology. 2019 ; Vol. 13, No. 2. pp. 287-300.
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title = "Comparative aspects of the care of familial hypercholesterolemia in the “Ten Countries Study”",
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 (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.",
keywords = "Asia-pacific region, Facilities, Familial hypercholesterolemia, Health care, Services, Southern hemisphere",
author = "Jing Pang and Chan, {Dick C.} and Miao Hu and Muir, {Lauretta A.} and See Kwok and Charng, {Min Ji} and Florkowski, {Christopher M.} and George, {Peter M.} and Jie Lin and Loi, {Do Doan} and Marais, {A. David} and Nawawi, {Hapizah M.} and Gonzalez-Santos, {Lourdes E.} and Su, {Ta Chen} and Truong, {Thanh Huong} and Santos, {Raul D.} and Handrean Soran and Brian Tomlinson and Shizuya Yamashita and Zanfina Ademi and Watts, {Gerald F.}",
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pages = "287--300",
journal = "Journal of Clinical Lipidology",
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Pang, J, Chan, DC, Hu, M, Muir, LA, Kwok, S, Charng, MJ, Florkowski, CM, George, PM, Lin, J, Loi, DD, Marais, AD, Nawawi, HM, Gonzalez-Santos, LE, Su, TC, Truong, TH, Santos, RD, Soran, H, Tomlinson, B, Yamashita, S, Ademi, Z & Watts, GF 2019, 'Comparative aspects of the care of familial hypercholesterolemia in the “Ten Countries Study”' Journal of Clinical Lipidology, vol. 13, no. 2, pp. 287-300. https://doi.org/10.1016/j.jacl.2019.01.009

Comparative aspects of the care of familial hypercholesterolemia in the “Ten Countries Study”. / Pang, Jing; Chan, Dick C.; Hu, Miao; Muir, Lauretta A.; Kwok, See; Charng, Min Ji; Florkowski, Christopher M.; George, Peter M.; Lin, Jie; Loi, Do Doan; Marais, A. David; Nawawi, Hapizah M.; Gonzalez-Santos, Lourdes E.; Su, Ta Chen; Truong, Thanh Huong; Santos, Raul D.; Soran, Handrean; Tomlinson, Brian; Yamashita, Shizuya; Ademi, Zanfina; Watts, Gerald F.

In: Journal of Clinical Lipidology, Vol. 13, No. 2, 04.2019, p. 287-300.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Comparative aspects of the care of familial hypercholesterolemia in the “Ten Countries Study”

AU - Pang, Jing

AU - Chan, Dick C.

AU - Hu, Miao

AU - Muir, Lauretta A.

AU - Kwok, See

AU - Charng, Min Ji

AU - Florkowski, Christopher M.

AU - George, Peter M.

AU - Lin, Jie

AU - Loi, Do Doan

AU - Marais, A. David

AU - Nawawi, Hapizah M.

AU - Gonzalez-Santos, Lourdes E.

AU - Su, Ta Chen

AU - Truong, Thanh Huong

AU - Santos, Raul D.

AU - Soran, Handrean

AU - Tomlinson, Brian

AU - Yamashita, Shizuya

AU - Ademi, Zanfina

AU - Watts, Gerald F.

PY - 2019/4

Y1 - 2019/4

N2 - 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.

AB - 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.

KW - Asia-pacific region

KW - Facilities

KW - Familial hypercholesterolemia

KW - Health care

KW - Services

KW - Southern hemisphere

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U2 - 10.1016/j.jacl.2019.01.009

DO - 10.1016/j.jacl.2019.01.009

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JO - Journal of Clinical Lipidology

JF - Journal of Clinical Lipidology

SN - 1876-4789

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