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Experiences of People Diagnosed with High Levels of LDL Cholesterol and Atherosclerotic Cardiovascular Disease: Results from a Multinational Qualitative Study Cover

Experiences of People Diagnosed with High Levels of LDL Cholesterol and Atherosclerotic Cardiovascular Disease: Results from a Multinational Qualitative Study

Open Access
|Jul 2025

Figures & Tables

Table 1

Characteristics of study participants.

VARIABLETOTALAUSTRALIABRAZILUNITED STATES
n (%)501938%1530%1632%
ASCVD (n, %)
    Yes2244%737%747%850%
    No2856%1263%853%850%
Age (mean, SD)54.710.761.911.548.311.551.210.1
Age Category (n, %)0%
    Less than 451224%211%747%319%
    45 to 642754%842%853%1169%
    Over 651122%947%00%213%
Sex (n, %)0%0%0%
    Female2550%421%1067%1169%
    Male2550%1579%533%531%
Marital Status (n, %)
    Married2754%947%1173%744%
    Never Married1428%842%213%425%
    Divorced714%15%213%425%
    Widowed24%15%00%16%
Smoking (n, %)
    Never smoked3366%1053%960%1488%
    Current smoker714%316%320%16%
    Ever smoker1020%632%320%16%
Weight (n, %)
    Underweight00%00%00%00%
    Normal weight1734%632%747%425%
    Overweight2448%1368%533%638%
    Obese918%00%320%638%
Rurality (n, %)
    Rural36%15%00%213%
    Suburban3264%1895%533%956%
    Urban1530%00%1067%531%
Education (n, %)
    Some high school48%421%00%00%
    High school510%15%427%00%
    Some college1020%15%213%744%
    College graduate or above3162%1368%960%956%
Event (n, %)
    Ischemic stroke510%00%213%319%
    Heart attack1428%421%533%531%
    Peripheral artery disease714%316%213%213%
    Unstable Angina36%00%213%16%
Comorbidity (n, %)
    Diabetes2040%421%1067%638%
    High blood pressure3366%1053%1280%1169%
Table 2

Summary of study findings.

TOPICKEY TAKEAWAYS
Pathways to diagnosis
  • In most instances high LDL-C was diagnosed as part of a routine health check-up; however, one-quarter of participants did not access health system services until they experienced signs and symptoms associated with ASCVD or a symptomatic co-occurring condition such as diabetes.

  • The remaining participants were diagnosed during routine care for a comorbid condition, most frequently diabetes.

Understanding of LDL-C risks and treatment
  • One in three participants described not fully understanding how serious high cholesterol was after being diagnosed. Only around half of participants were aware at diagnosis that lipid-lowering therapies need to be taken throughout their life.

  • Among people who experienced an ASCVD event, the majority did not immediately recognize their symptoms as heart-related, sometimes waiting hours or days before seeking care.

Emotional impacts
  • Learning of a high LDL-C level often triggered emotional responses. Many patients described feeling anxiety or fear about developing heart disease, especially if they understood the link between cholesterol and serious events.

  • Some who had struggled with high cholesterol for years (or had family histories of heart disease) expressed frustration or fatalism, feeling that a heart problem might be inevitable. These emotions influenced how patients approached their treatment.

Factors impacting lifestyle change
  • Nearly all patients reported attempting lifestyle modifications (such as healthier diets, weight loss, and exercise) to improve their cholesterol. However, they encountered significant challenges in sustaining these changes.

  • Common barriers included conflicts between work schedules and lifestyle change, difficulty altering long-standing eating habits, limited knowledge about heart-healthy diets, cultural or regional dietary preferences that are hard to change, lack of time for exercise, and in some cases, disappointment when lifestyle changes alone did not quickly lower LDL-C.

Perceptions of current therapies and desired outcomes
  • Participants expressed overall satisfaction with current treatments but envisioned ideal therapies like those requiring less frequent administration, offering non-pill formats (e.g., injections and patches), and having fewer side effects, better efficacy, or greater affordability.

  • Meaningful treatment outcomes extended beyond clinical metrics. Patients valued improvements in lab results, prevention of cardiovascular events, longevity, and enhanced quality of life, particularly in maintaining independence and spending time with loved ones.

Table 3

Example messages to improve messaging on the importance of remaining adherent to a care plan suggested by participants.

Message Recommended by ParticipantsIllustrative Quotes from Interviewees
Share examples from real people living with high cholesterolParticipant in the United States who experienced an ASCVD event‬ hospitalization: I would start off with the education part of lowering your cholesterol could significantly lower your chances for heart disease, heart attack. I would try to give examples of things that I have done myself and show little snippets of—or videos of me actually doing these things. And I guess trying to appeal to the sense that I’m living. Had I not been taking these medications, or if I’m not taking it correctly…what the effect of that would be.‬‬‬
Preventing a cardiac event is easier than recovering from oneParticipant in the United States who experienced an ASCVD event‬ hospitalization: Don’t wait until you’ve fallen off the cliff to try to get back up. So be careful. Be careful, because then it’s much harder to go back and try to fix it than it is to prevent it.
Take it seriously because the effects of not taking it seriously are physically painfulParticipant in Brazil who experienced an ASCVD event hospitalization: Look, I know I felt terrible. It felt like death. So whoever can, whoever has a health plan, whatever, get yourself treated, go and get your tests done to make sure you don’t have anything, to take care of yourself because it’s very bad. It’s terrible.
Be blunt about risk of cardiac eventsParticipant in Australia who had not experienced an ASCVD event hospitalization: I think, personally, the world in general has become too afraid to be direct, do you know what I mean? I think the message doctors need to give is direct to the point and even throw a little bit of scare factor in. And come to think of it, [doctor’s name] did say it could lead on to heart disease and he did also mention about my weight. He always mentions my weight and he’s given me charts of what I should eat and what I shouldn’t. I think people just need to realize, look, if you’ve got it, take your tablets. It’s a very simple regime to do and it becomes automatic and hopefully doesn’t lead to… I don’t know. You basically really gotta be more blunt and say, Okay, if you don’t take your tablets, you’re gonna have the heart attack and you’re gonna end up with problems with your heart. So, I don’t know. It’s hard. It’s very hard to say.
You need to take your medicinesParticipant in the United States who experienced an ASCVD event‬ hospitalization: You just have to try and live every day the best that you possibly can. And I know that, for a lot of people, they don’t like taking meds. But they are a life-saving tool. There’s no question about it.
RepetitionParticipant in the United States who experienced an ASCVD event‬ hospitalization: Probably in my case, it’s effective just to hear it all the time. I can be stubborn and tend to do things at my own pace. So, I’m the kind of individual that constantly needs to hear it, probably, for it to be most effective.
DOI: https://doi.org/10.5334/gh.1441 | Journal eISSN: 2211-8179
Language: English
Submitted on: Feb 25, 2025
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Accepted on: Jun 11, 2025
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Published on: Jul 15, 2025
Published by: Ubiquity Press
In partnership with: Paradigm Publishing Services
Publication frequency: 1 issue per year

© 2025 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, published by Ubiquity Press
This work is licensed under the Creative Commons Attribution 4.0 License.