{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,30]],"date-time":"2026-03-30T15:19:00Z","timestamp":1774883940205,"version":"3.50.1"},"reference-count":31,"publisher":"Ubiquity Press, Ltd.","issue":"1","license":[{"start":{"date-parts":[[2025,7,15]],"date-time":"2025-07-15T00:00:00Z","timestamp":1752537600000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["gh"],"abstract":"<jats:p>Background: Elevated low-density lipoprotein cholesterol (LDL-C) levels are a leading risk factor for atherosclerotic cardiovascular disease (ASCVD), a major global cause of illness and death. Patients\u2019 qualitative insights about experiences, priorities, and needs are essential for creating more targeted, patient-centered quality improvement interventions.\nObjectives: To document the experiences of people with high levels of low-density LDL-C in three countries.\nMethods: Qualitative study of 60-min in-depth interviews with 50 adult patients from Australia, Brazil, and the United States. The study was overseen by a Steering Committee comprising patients, patient advocates, researchers, and cardiologists. The interviews explored pathways and barriers to high LDL-C diagnosis; the burden of managing high LDL-C and the awareness of the association between high LDL-C and cardiovascular risks. The data were analyzed by applying a structured, team-based approach to coding qualitative data.\nResults: There were three main pathways to diagnosing high cholesterol: routine physical exams conducted by primary care providers; symptomatic presentations or incidental findings during emergency visits and through a healthcare visit for another condition, frequently diabetes. Healthcare providers\u2019 communication styles influenced patients\u2019 perceptions of their conditions. Two-thirds of participants (n = 33) attempted lifestyle changes after their high cholesterol diagnosis, but work schedules and daily routines posed barriers to maintaining healthy habits. Some participants who experienced ASCVD events waited hours or days before seeking care, assuming their symptoms were not serious. After diagnosis of an ASCVD event, many patients feared death and worried about their families\u2019 futures. When asked about potential improvements to their current therapy, 21 patients mentioned reduced administration frequency.\nConclusions: This pilot study provides insights into patients\u2019 experiences living with and managing elevated LDL-C. It describes opportunities for policymakers and healthcare providers to improve the detection of elevated LDL-C and support patients in understanding risks and strategies for reducing the risk of ASCVD events.<\/jats:p>","DOI":"10.5334\/gh.1441","type":"journal-article","created":{"date-parts":[[2025,7,15]],"date-time":"2025-07-15T10:32:01Z","timestamp":1752575521000},"page":"63","source":"Crossref","is-referenced-by-count":2,"title":["Experiences of People Diagnosed with High Levels of LDL Cholesterol and Atherosclerotic Cardiovascular Disease: Results from a Multinational Qualitative Study"],"prefix":"10.5334","volume":"20","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1579-7660","authenticated-orcid":false,"given":"Neil","family":"Johnson","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4491-7139","authenticated-orcid":false,"given":"Joe","family":"Vandigo","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Fernanda","family":"De Carvalho","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Celina","family":"Gorre","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tanya","family":"Hall","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6342-7138","authenticated-orcid":false,"given":"Susan E.","family":"Hennessy","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9510-2979","authenticated-orcid":false,"given":"Dhruv S.","family":"Kazi","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0469-9413","authenticated-orcid":false,"given":"Kornelia","family":"Kotseva","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0005-1826-9512","authenticated-orcid":false,"given":"Patsy","family":"Petrie","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0001-6871-542X","authenticated-orcid":false,"given":"David","family":"Kelly","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ankita","family":"Saxena","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6892-3958","authenticated-orcid":false,"given":"Elisabeth M.","family":"Oehrlein","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"3285","published-online":{"date-parts":[[2025,7,15]]},"reference":[{"issue":"8","key":"key20250715103159_B1","first-page":"e347","article-title":"2024 heart disease and stroke statistics: A report of US and global data from the American Heart Association","volume":"149","year":"2024","journal-title":"Circulation"},{"issue":"4","key":"key20250715103159_B2","first-page":"e89","article-title":"Forecasting the economic burden of cardiovascular disease and stroke in the United States through 2050: A presidential advisory from the American Heart Association","volume":"150","year":"2024","journal-title":"Circulation"},{"issue":"12","key":"key20250715103159_B3","article-title":"The direct and indirect costs of cardiovascular diseases in Brazil","volume":"17","year":"2022","journal-title":"PLoS One"},{"issue":"8","key":"key20250715103159_B4","doi-asserted-by":"crossref","first-page":"1212","DOI":"10.1093\/eurjpc\/zwab001","article-title":"Future burden of cardiovascular disease in Australia: impact on health and economic outcomes between 2020 and 2029","volume":"29","year":"2022","journal-title":"European Journal of Preventive Cardiology"},{"key":"key20250715103159_B5","unstructured":"CDC. Lipoprotein (a) [Internet]. 2022; [cited 2024 Apr 18]. Available from: https:\/\/www.cdc.gov\/genomics\/disease\/lipoprotein_a.htm"},{"key":"key20250715103159_B6","unstructured":"CDC. Familial hypercholesterolemia [Internet]. 2023; [cited 2024 Apr 18]. Available from: https:\/\/www.cdc.gov\/genomics\/disease\/fh\/FH.htm"},{"issue":"24","key":"key20250715103159_B7","doi-asserted-by":"crossref","first-page":"e285","DOI":"10.1016\/j.jacc.2018.11.003","article-title":"2018 AHA\/ACC\/AACVPR\/AAPA\/ABC\/ACPM\/ADA\/AGS\/APhA\/ASPC\/NLA\/PCNA guideline on the management of blood cholesterol: A report of the American College of Cardiology\/American Heart Association Task Force on clinical practice guidelines","volume":"73","year":"2019","journal-title":"Journal of the American College of Cardiology"},{"key":"key20250715103159_B8","article-title":"Treatment gaps in the implementation of LDL cholesterol control among high- and very high-risk patients in Europe between 2020 and 2021: The multinational observational SANTORINI study","volume":"29","year":"2023","journal-title":"The Lancet Regional Health: Europe"},{"key":"key20250715103159_B9","article-title":"Lipid treatment status and goal attainment among patients with atherosclerotic cardiovascular disease in the United States: A 2019 update","volume":"10","year":"2022","journal-title":"American Journal of Preventive Cardiology"},{"issue":"3","key":"key20250715103159_B10","doi-asserted-by":"crossref","first-page":"e384","DOI":"10.1016\/j.jacl.2024.02.005","article-title":"Statins use for primary prevention of cardiovascular disease: A population-based digitally enabled real-world evidence cross-sectional study in primary care in Brazil","volume":"18","year":"2024","journal-title":"Journal of Clinical Lipidology"},{"issue":"6","key":"key20250715103159_B11","first-page":"633","article-title":"The EUROASPIRE surveys: Lessons learned in cardiovascular disease prevention","volume":"7","year":"2017","journal-title":"Cardiovascular Diagnosis and Therapy"},{"key":"key20250715103159_B12","unstructured":"EuroAspire VI [Internet]. [cited 2024 Dec 11]. Available from: https:\/\/www.escardio.org\/Research\/registries\/global-registries-and-surveys-programme\/euroaspire-vi"},{"issue":"3","key":"key20250715103159_B13","article-title":"Shared decision-making about cardiovascular disease medication in older people: A qualitative study of patient experiences in general practice","volume":"9","year":"2019","journal-title":"BMJ Open"},{"issue":"3","key":"key20250715103159_B14","doi-asserted-by":"crossref","first-page":"340","DOI":"10.1080\/02813432.2020.1794414","article-title":"\u201cIt\u2019s up to me\u201d: The experience of patients at high risk of cardiovascular disease of lifestyle change","volume":"38","year":"2020","journal-title":"Scandinavian Journal of Primary Health Care"},{"issue":"3","key":"key20250715103159_B15","doi-asserted-by":"crossref","first-page":"83","DOI":"10.35680\/2372-0247.1418","article-title":"Living with cardiovascular disease (CVD): Exploring the biggest challenges for people affected by CVD in the UK, and their use (or not) of online resources","volume":"7","year":"2020","journal-title":"Patient Experience Journal"},{"issue":"9","key":"key20250715103159_B16","article-title":"Exploring barriers and facilitators of primary care physicians towards optimising statin therapy in patients with hyperlipidaemia in the very high-risk group: A qualitative study in Singapore","volume":"13","year":"2023","journal-title":"BMJ Open"},{"issue":"1","key":"key20250715103159_B17","article-title":"POSC227 what are the main barriers for achieving low-density lipoprotein cholesterol goals in post myocardial infarction patients? Perspectives from physicians in six European countries","volume":"25","year":"2022","journal-title":"Value in Health"},{"key":"key20250715103159_B18","first-page":"4","article-title":"Enhancing the incorporation of the patient\u2019s voice in drug development and evaluation","year":"2018","journal-title":"Research Involvement and Engagement [Internet]"},{"issue":"6","key":"key20250715103159_B19","doi-asserted-by":"crossref","first-page":"929","DOI":"10.1177\/2168479015580384","article-title":"Partnering with patients in the development and lifecycle of medicines: A call for action","volume":"49","year":"2015","journal-title":"Therapeutic Innovation & Regulatory Science"},{"issue":"3","key":"key20250715103159_B20","doi-asserted-by":"crossref","first-page":"263","DOI":"10.1007\/s40271-023-00658-3","article-title":"Development and testing of a chronic-disease patient experience mapping toolbox","volume":"17","year":"2024","journal-title":"Patient"},{"key":"key20250715103159_B21","article-title":"Sample sizes for saturation in qualitative research: A systematic review of empirical tests","volume":"292","year":"2022","journal-title":"Social Science & Medicine"},{"key":"key20250715103159_B22","article-title":"Structuring a team-based approach to coding qualitative data","volume":"19","year":"2020","journal-title":"International Journal of Qualitative Methods"},{"key":"key20250715103159_B23","unstructured":"ATLAS.ti [Internet]. [cited 2024 Apr 1]. ATLAS.ti. Available from: https:\/\/atlasti.com"},{"issue":"9","key":"key20250715103159_B24","article-title":"Standards for reporting qualitative research: A synthesis of recommendations","volume":"89","year":"2014","journal-title":"Academic Medicine"},{"key":"key20250715103159_B25","unstructured":"European Commission announces EU Cardiovascular Health Plan [Internet]. [cited 2024 Dec 11]. Available from: https:\/\/www.escardio.org\/The-ESC\/Press-Office\/Press-releases\/eu-health-ministers-adopt-landmark-council-conclusions-on-cardiovascular-health"},{"issue":"4","key":"key20250715103159_B26","first-page":"339","article-title":"A Manifesto from Global Heart Hub for early detection and diagnosis of cardiovascular disease","volume":"46","year":"2024","journal-title":"European Heart Journal"},{"issue":"11S","key":"key20250715103159_B27","doi-asserted-by":"crossref","first-page":"S109","DOI":"10.1097\/ACM.0000000000004323","article-title":"The basic science of patient-physician communication: A critical scoping review","volume":"96","year":"2021","journal-title":"Academic Medicine"},{"issue":"11","key":"key20250715103159_B28","doi-asserted-by":"crossref","first-page":"912","DOI":"10.1161\/CIR.0000000000001162","article-title":"Shared decision-making and cardiovascular health: A scientific statement from the American Heart Association","volume":"148","year":"2023","journal-title":"Circulation"},{"issue":"3","key":"key20250715103159_B29","article-title":"Identifying enablers and barriers to referral, uptake and completion of lifestyle modification programmes: A rapid literature review","volume":"11","year":"2021","journal-title":"BMJ Open"},{"key":"key20250715103159_B30","unstructured":"US Department of Health and Human Services. 45 CFR 46.104 \u2014 Exempt research. [Internet]. [cited 2024 Jul 24]. Available from: https:\/\/www.ecfr.gov\/current\/title-45\/part-46\/section-46.104"},{"key":"key20250715103159_B31","unstructured":"National Health Council. Fair Market Calculator. [Internet]. [cited 2023 Oct 13]. Available from: https:\/\/nationalhealthcouncil.org\/fair-market-value-calculator\/"}],"container-title":["Global Heart"],"original-title":[],"link":[{"URL":"https:\/\/account.globalheartjournal.com\/index.php\/up-j-gh\/article\/download\/1441\/2037","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/account.globalheartjournal.com\/index.php\/up-j-gh\/article\/download\/1441\/2038","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/account.globalheartjournal.com\/index.php\/up-j-gh\/article\/download\/1441\/2039","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/account.globalheartjournal.com\/index.php\/up-j-gh\/article\/download\/1441\/2040","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/account.globalheartjournal.com\/index.php\/up-j-gh\/article\/download\/1441\/2041","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/account.globalheartjournal.com\/index.php\/up-j-gh\/article\/download\/1441\/2042","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/account.globalheartjournal.com\/index.php\/up-j-gh\/article\/download\/1441\/2037","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,7,15]],"date-time":"2025-07-15T10:38:21Z","timestamp":1752575901000},"score":1,"resource":{"primary":{"URL":"https:\/\/account.globalheartjournal.com\/index.php\/up-j-gh\/article\/view\/1441"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,7,15]]},"references-count":31,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2025,1,9]]}},"URL":"https:\/\/doi.org\/10.5334\/gh.1441","relation":{},"ISSN":["2211-8179","2211-8160"],"issn-type":[{"value":"2211-8179","type":"electronic"},{"value":"2211-8160","type":"print"}],"subject":[],"published":{"date-parts":[[2025,7,15]]}}}