Testing
Patients call elevated Lp(a) an "invisible" disorder, with clinicians often reluctant to test given the lack of effective treatment (Patient Prefer Adherence 2025)
Original title: Living with Elevated Lipoprotein(a) Levels: The Experiences of Patients and Caregivers
This qualitative study convened two multinational virtual moderated discussions between fifteen individuals with elevated Lp(a), nine relatives acting as caregivers, and clinicians, to explore lived experience of the condition. Most participants were tested for Lp(a) after a prior cardiovascular event or because of family history, but clinicians were often reluctant to measure it given the absence of an effective treatment. After confirmed elevated Lp(a), the most common responses were lifestyle changes and cholesterol-lowering medication, with 25% of patients and 38% of relatives viewing lifestyle measures alone as unsuccessful for managing overall cardiovascular risk, and lifestyle advice frequently described as conflicting and unclear. Participants characterised elevated Lp(a) as an "invisible" disorder with very low public and even physician awareness, which they felt limits access to testing and keeps clinical focus reactive, after an event, rather than preventive.
Original abstract
Background: Elevated lipoprotein(a) (Lp[a]) is an inherited condition that increases cardiovascular disease (CVD) risk, independent of other factors, such as low-density lipoprotein C. Few attempts have been made to explore the life experiences of people with elevated Lp(a).
Objective: To explore the experiences of people living with or caring for a relative with elevated Lp(a).
Methods: Two multinational, virtual, interactive, moderated discussions of specific questions between people with elevated Lp(a) and relatives (caregivers), with experienced clinicians attending.
Results: Fifteen individuals with elevated Lp(a) and nine relatives took part in the virtual discussions. The most frequent reasons to measure Lp(a) levels were prior CVD events, eg, heart attacks, stroke, aortic valve diseases, or a family history of CVD events. Clinicians were often reluctant to measure Lp(a) levels as no effective treatment is available to people with elevated values. The most common interventions after confirmed elevated Lp(a) levels were lifestyle modifications and cholesterol-lowering medications to reduce overall CVD risk. A healthy lifestyle with diet and exercise was perceived as unsuccessful in managing overall CVD risk by 25% of people with elevated Lp(a) and 38% of relatives. Lifestyle advice was considered conflicting, unclear and inconsistent. Participants experienced elevated Lp(a) as an "invisible" disorder with very low awareness in the general population. Physicians' advice was often too superficial to meet patients' needs, putting insufficient emphasis on prevention and focusing on interventions after a CVD event.
Conclusion: Elevated Lp(a) was considered an "invisible" disorder with limited understanding among physicians and the general public. This reduces access to tests and shifts physician focus away from prevention towards reactive intervention.
Summary written by lp-a.org from the published abstract; figures as published. Page updated 18 August 2026. Methods.