Living with Elevated Lipoprotein(a) Levels: The Experiences of Patients and Caregivers.

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.