Experiences of People Diagnosed with High Levels of LDL Cholesterol and Atherosclerotic Cardiovascular Disease: Results from a Multinational Qualitative Study
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’ qualitative insights about experiences, priorities, and needs are essential for creating more tar...
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Ubiquity Press
2025-07-01
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| Series: | Global Heart |
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| Online Access: | https://account.globalheartjournal.com/index.php/up-j-gh/article/view/1441 |
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| author | Neil Johnson Joe Vandigo Fernanda de Carvalho Celina Gorre Tanya Hall Susan E. Hennessy Dhruv S. Kazi Kornelia Kotseva Patsy Petrie David Kelly Ankita Saxena Elisabeth M. Oehrlein |
| author_facet | Neil Johnson Joe Vandigo Fernanda de Carvalho Celina Gorre Tanya Hall Susan E. Hennessy Dhruv S. Kazi Kornelia Kotseva Patsy Petrie David Kelly Ankita Saxena Elisabeth M. Oehrlein |
| author_sort | Neil Johnson |
| collection | DOAJ |
| description | 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’ qualitative insights about experiences, priorities, and needs are essential for creating more targeted, patient-centered quality improvement interventions. Objectives: To document the experiences of people with high levels of low-density LDL-C in three countries. Methods: 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. Results: 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’ communication styles influenced patients’ 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’ futures. When asked about potential improvements to their current therapy, 21 patients mentioned reduced administration frequency. Conclusions: This pilot study provides insights into patients’ 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. |
| format | Article |
| id | doaj-art-0b98b1895a674028a2f9fa772b9ddfd3 |
| institution | Kabale University |
| issn | 2211-8179 |
| language | English |
| publishDate | 2025-07-01 |
| publisher | Ubiquity Press |
| record_format | Article |
| series | Global Heart |
| spelling | doaj-art-0b98b1895a674028a2f9fa772b9ddfd32025-08-21T12:35:36ZengUbiquity PressGlobal Heart2211-81792025-07-01201636310.5334/gh.14411422Experiences of People Diagnosed with High Levels of LDL Cholesterol and Atherosclerotic Cardiovascular Disease: Results from a Multinational Qualitative StudyNeil Johnson0https://orcid.org/0000-0002-1579-7660Joe Vandigo1https://orcid.org/0000-0003-4491-7139Fernanda de Carvalho2Celina Gorre3Tanya Hall4Susan E. Hennessy5https://orcid.org/0000-0002-6342-7138Dhruv S. Kazi6https://orcid.org/0000-0002-9510-2979Kornelia Kotseva7https://orcid.org/0000-0003-0469-9413Patsy Petrie8https://orcid.org/0009-0005-1826-9512David Kelly9https://orcid.org/0009-0001-6871-542XAnkita Saxena10Elisabeth M. Oehrlein11https://orcid.org/0000-0002-6892-3958Global Heart Hub, Galway, ConnachtApplied Patient Experience, Washington, DCInstituto Lado a Lado pela Vida, São PauloWomenHeart, Washington, DCHearts4heart, Perth, Western AustraliaUniversity of California, San Francisco, CARichard A. and Susan F. Smith Centre for Outcomes Research, Cardiac Critical Care Unit, Beth Israel Deaconess Medical Centre, Harvard Medical School, Boston, MANational Institute for Prevention and Cardiovascular Health, University of Galway, IE; Imperial College Healthcare NHS Trust, LondonHEART UK & FH Europe Foundation Ambassador, LinlithgowGlobal Heart Hub, Galway, ConnachtApplied Patient Experience, Washington, DCApplied Patient Experience, Washington, DCBackground: 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’ qualitative insights about experiences, priorities, and needs are essential for creating more targeted, patient-centered quality improvement interventions. Objectives: To document the experiences of people with high levels of low-density LDL-C in three countries. Methods: 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. Results: 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’ communication styles influenced patients’ 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’ futures. When asked about potential improvements to their current therapy, 21 patients mentioned reduced administration frequency. Conclusions: This pilot study provides insights into patients’ 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.https://account.globalheartjournal.com/index.php/up-j-gh/article/view/1441cardiovascular riskqualitative studypatient experiencediagnostic pathwayslifestyle changes |
| spellingShingle | Neil Johnson Joe Vandigo Fernanda de Carvalho Celina Gorre Tanya Hall Susan E. Hennessy Dhruv S. Kazi Kornelia Kotseva Patsy Petrie David Kelly Ankita Saxena Elisabeth M. Oehrlein Experiences of People Diagnosed with High Levels of LDL Cholesterol and Atherosclerotic Cardiovascular Disease: Results from a Multinational Qualitative Study Global Heart cardiovascular risk qualitative study patient experience diagnostic pathways lifestyle changes |
| title | Experiences of People Diagnosed with High Levels of LDL Cholesterol and Atherosclerotic Cardiovascular Disease: Results from a Multinational Qualitative Study |
| title_full | Experiences of People Diagnosed with High Levels of LDL Cholesterol and Atherosclerotic Cardiovascular Disease: Results from a Multinational Qualitative Study |
| title_fullStr | Experiences of People Diagnosed with High Levels of LDL Cholesterol and Atherosclerotic Cardiovascular Disease: Results from a Multinational Qualitative Study |
| title_full_unstemmed | Experiences of People Diagnosed with High Levels of LDL Cholesterol and Atherosclerotic Cardiovascular Disease: Results from a Multinational Qualitative Study |
| title_short | Experiences of People Diagnosed with High Levels of LDL Cholesterol and Atherosclerotic Cardiovascular Disease: Results from a Multinational Qualitative Study |
| title_sort | experiences of people diagnosed with high levels of ldl cholesterol and atherosclerotic cardiovascular disease results from a multinational qualitative study |
| topic | cardiovascular risk qualitative study patient experience diagnostic pathways lifestyle changes |
| url | https://account.globalheartjournal.com/index.php/up-j-gh/article/view/1441 |
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