{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,12,8]],"date-time":"2025-12-08T22:26:41Z","timestamp":1765232801133,"version":"3.44.0"},"reference-count":35,"publisher":"Elsevier BV","license":[{"start":{"date-parts":[[2020,1,1]],"date-time":"2020-01-01T00:00:00Z","timestamp":1577836800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2020,1,1]],"date-time":"2020-01-01T00:00:00Z","timestamp":1577836800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2019,12,1]],"date-time":"2019-12-01T00:00:00Z","timestamp":1575158400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["atherosclerosis-journal.com","clinicalkey.com","clinicalkey.com.au","clinicalkey.es","clinicalkey.fr","clinicalkey.jp","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Atherosclerosis"],"published-print":{"date-parts":[[2020,1]]},"DOI":"10.1016\/j.atherosclerosis.2019.11.030","type":"journal-article","created":{"date-parts":[[2019,12,2]],"date-time":"2019-12-02T07:17:33Z","timestamp":1575271053000},"page":"11-17","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":12,"special_numbering":"C","title":["The development and first results of a health-related outcomes set in familial hypercholesterolemia (FH) patients: Knowledge is health"],"prefix":"10.1016","volume":"293","author":[{"given":"Janneke W.C.M.","family":"Mulder","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Annette M.H.","family":"Galema-Boers","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lisanne M.","family":"de Jong-Verweij","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jan A.","family":"Hazelzet","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jeanine E.","family":"Roeters van Lennep","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"78","reference":[{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib1","doi-asserted-by":"crossref","first-page":"1736","DOI":"10.1016\/S0140-6736(18)32203-7","article-title":"Global, regional, and national age-sex-specific mortality for 282 causes of death in 195 countries and territories, 1980-2017: a systematic analysis for the Global Burden of Disease Study 2017","volume":"392","author":"Roth","year":"2018","journal-title":"The Lancet"},{"year":"2011","series-title":"The Global Economic Burden of Non-communicable Diseases: Report by the World Economic Forum and the Harvard School of Public Health","author":"Bloom","key":"10.1016\/j.atherosclerosis.2019.11.030_bib2"},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib3","doi-asserted-by":"crossref","first-page":"2004","DOI":"10.1161\/ATVBAHA.116.307514","article-title":"Coronary heart disease, peripheral arterial disease, and stroke in familial hypercholesterolaemia: insights from the SAFEHEART registry (Spanish familial hypercholesterolaemia cohort study)","volume":"36","author":"Perez de Isla","year":"2016","journal-title":"Arterioscler. Thromb. Vasc. Biol."},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib4","doi-asserted-by":"crossref","first-page":"560","DOI":"10.1093\/eurheartj\/ehu058","article-title":"Homozygous autosomal dominant hypercholesterolaemia in The Netherlands: prevalence, genotype-phenotype relationship, and clinical outcome","volume":"36","author":"Sjouke","year":"2015","journal-title":"Eur. Heart J."},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib5","doi-asserted-by":"crossref","first-page":"1384","DOI":"10.1093\/eurheartj\/ehw028","article-title":"Mutations causative of familial hypercholesterolaemia: screening of 98 098 individuals from the Copenhagen General Population Study estimated a prevalence of 1 in 217","volume":"37","author":"Benn","year":"2016","journal-title":"Eur. Heart J."},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib6","doi-asserted-by":"crossref","first-page":"483","DOI":"10.1016\/j.atherosclerosis.2018.06.859","article-title":"Familial hypercholesterolemia treatments: guidelines and new therapies","volume":"277","author":"Raal","year":"2018","journal-title":"Atherosclerosis"},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib7","first-page":"2167","article-title":"The agenda for familial hypercholesterolemia","volume":"132","author":"Gidding","year":"2015"},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib8","article-title":"Familial hypercholesterolaemia","volume":"3","author":"Defesche","year":"2017","journal-title":"Nat. Rev. Dis. Prim."},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib9","doi-asserted-by":"crossref","first-page":"309","DOI":"10.1016\/j.ijcard.2013.11.025","article-title":"Integrated guidance on the care of familial hypercholesterolaemia from the International FH Foundation","volume":"171","author":"Watts","year":"2014","journal-title":"Int. J. Cardiol."},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib10","doi-asserted-by":"crossref","first-page":"172","DOI":"10.1016\/j.atherosclerosis.2016.10.020","article-title":"Drug treatment and adherence of subjects <40 years with diagnosis of heterozygous familial hypercholesterolemia","volume":"254","author":"Casula","year":"2016","journal-title":"Atherosclerosis"},{"year":"2006","series-title":"Redefining Health Care: Creating Value-Based Competition on Results","author":"Porter","key":"10.1016\/j.atherosclerosis.2019.11.030_bib11"},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib12","doi-asserted-by":"crossref","DOI":"10.1093\/eurheartj\/eht273","article-title":"Familial hypercholesterolaemia is underdiagnosed and undertreated in the general population: guidance for clinicians to prevent coronary heart disease: consensus statement of the European Atherosclerosis Society","volume":"34","author":"Nordestgaard","year":"2013","journal-title":"Eur. Heart J."},{"issue":"Jul","key":"10.1016\/j.atherosclerosis.2019.11.030_bib13","doi-asserted-by":"crossref","first-page":"1163","DOI":"10.1016\/j.ejso.2019.01.007","article-title":"Implementation of value based breast cancer care","volume":"7","author":"van Egdom","year":"2019","journal-title":"Eur. J. Surg. Oncol."},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib14","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0050032","article-title":"Can multiple lifestyle behaviours Be improved in people with familial hypercholesterolemia? Results of a parallel randomised controlled trial","volume":"7","author":"Broekhuizen","year":"2012","journal-title":"PLoS One"},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib15","first-page":"475","volume":"vol. 18","author":"Senior","year":"2004"},{"year":"2017","series-title":"eHealth DCoef. TobaccoUse-v3.1(2017EN)","key":"10.1016\/j.atherosclerosis.2019.11.030_bib16"},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib17","first-page":"139","article-title":"Management of familial hypercholesterolemia: a review of the recommendations from the national lipid association expert panel on familial hypercholesterolemia","volume":"19","author":"Robinson","year":"2013"},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib18","doi-asserted-by":"crossref","first-page":"443","DOI":"10.1016\/j.pec.2005.05.011","article-title":"Self-efficacy in patients with clinical manifestations of vascular diseases","volume":"61","author":"Sol","year":"2006","journal-title":"Patient Educ. Couns."},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib19","first-page":"13","article-title":"A review of health utilities using the EQ-5D in studies of cardiovascular disease","volume":"8","author":"Dyer","year":"2010"},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib20","doi-asserted-by":"crossref","first-page":"1717","DOI":"10.1007\/s11136-012-0322-4","article-title":"Measurement properties of the EQ-5D-5L compared to the EQ-5D-3L across eight patient groups: a multi-country study","volume":"22","author":"Janssen","year":"2013","journal-title":"J. Qual Life Res"},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib21","volume":"2018","author":"Netherlands Institute for Social Research","year":"2018","journal-title":"Statusscores"},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib22","first-page":"61","article-title":"Statin usage and all-cause and disease-specific mortality in a nationwide study","volume":"21","author":"Haukka","year":"2012"},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib23","doi-asserted-by":"crossref","first-page":"3956","DOI":"10.1210\/jc.2012-1563","article-title":"Familial hypercholesterolemia in the Danish general population: prevalence, coronary artery disease, and cholesterol-lowering medication","volume":"97","author":"Benn","year":"2012","journal-title":"J. Clin. Endocrinol. Metab."},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib24","doi-asserted-by":"crossref","first-page":"409","DOI":"10.1016\/j.jacl.2017.12.014","article-title":"Cardiovascular risk in patients with familial hypercholesterolemia using optimal lipid-lowering therapy","volume":"12","author":"Galema-Boers","year":"2018","journal-title":"J. Clin. Lipidol."},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib25","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0183494","article-title":"Assessment of physicians' awareness and knowledge of familial hypercholesterolemia in Saudi Arabia: is there a gap?","volume":"12","author":"Batais","year":"2017","journal-title":"PLoS One"},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib26","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2017-017817","article-title":"An enquiry based on a standardised questionnaire into knowledge, awareness and preferences concerning the care of familial hypercholesterolaemia among primary care physicians in the Asia-Pacific region: the \"Ten Countries Study","volume":"7","author":"Pang","year":"2017","journal-title":"BMJ Open"},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib27","doi-asserted-by":"crossref","first-page":"161","DOI":"10.1016\/j.atherosclerosis.2016.07.009","article-title":"Knowledge gaps in the management of familial hypercholesterolaemia. A UK based survey","volume":"252","author":"Schofield","year":"2016","journal-title":"Atherosclerosis"},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib28","doi-asserted-by":"crossref","first-page":"46","DOI":"10.1016\/j.atherosclerosissup.2018.04.139","article-title":"Knowledge and management of familial hypercholesterolemia among physicians in China","volume":"32","author":"Lin","year":"2018","journal-title":"Atherosclerosis Suppl."},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib29","doi-asserted-by":"crossref","first-page":"207","DOI":"10.1377\/hlthaff.2012.1061","article-title":"What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs","volume":"32","author":"Hibbard","year":"2013","journal-title":"Health Aff. (Project Hope)"},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib30","first-page":"178","article-title":"Effect of educational program on self-care behaviors and health outcome among patients with heart failure: an experimental study","volume":"15","author":"Al-Sutari","year":"2017"},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib31","doi-asserted-by":"crossref","first-page":"160","DOI":"10.1016\/j.pec.2014.01.012","article-title":"A systematic review of patient education in cardiac patients: do they increase knowledge and promote health behavior change?","volume":"95","author":"Ghisi","year":"2014","journal-title":"Patient Educ. Couns."},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib32","doi-asserted-by":"crossref","first-page":"343","DOI":"10.1016\/j.jval.2016.01.003","article-title":"Dutch tariff for the five-level version of EQ-5D","volume":"19","author":"Versteegh M","year":"2016","journal-title":"Value Health"},{"volume":"vol. 2018","year":"2018","author":"CBS","key":"10.1016\/j.atherosclerosis.2019.11.030_bib33"},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib34","first-page":"348","volume":"vol. 12","author":"Broekhuizen","year":"2012"},{"key":"10.1016\/j.atherosclerosis.2019.11.030_bib35","doi-asserted-by":"crossref","first-page":"712","DOI":"10.1038\/nrcardio.2009.163","article-title":"Socioeconomic status and cardiovascular disease: risks and implications for care","volume":"6","author":"Clark","year":"2009","journal-title":"Nat. Rev. Cardiol."}],"container-title":["Atherosclerosis"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0021915019316016?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0021915019316016?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,9,18]],"date-time":"2025-09-18T00:39:38Z","timestamp":1758155978000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S0021915019316016"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,1]]},"references-count":35,"alternative-id":["S0021915019316016"],"URL":"https:\/\/doi.org\/10.1016\/j.atherosclerosis.2019.11.030","relation":{},"ISSN":["0021-9150"],"issn-type":[{"type":"print","value":"0021-9150"}],"subject":[],"published":{"date-parts":[[2020,1]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"The development and first results of a health-related outcomes set in familial hypercholesterolemia (FH) patients: Knowledge is health","name":"articletitle","label":"Article Title"},{"value":"Atherosclerosis","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.atherosclerosis.2019.11.030","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2019 The Authors. Published by Elsevier B.V.","name":"copyright","label":"Copyright"}]}}