Patient Preference and Adherence (Feb 2025)
Living with Elevated Lipoprotein(a) Levels: The Experiences of Patients and Caregivers
Abstract
Elisabeth Steinhagen-Thiessen,1 Magdalena Daccord,2 Emma C Print,2 Yujiao Wang,2 Janine Shipton,3 India Rijken,2 Michael Shipton,2 Flavia Perna,4 Matthias Schoenberger4 1FRIEDE SPRINGER - Cardiovascular Prevention Center, Charité Universitätsmedizin, Berlin, Germany; 2FH Europe Foundation, Amsterdam, the Netherlands; 3Swiss FH/SGFH, Breitenbach, Switzerland; 4Novartis AG, Basel, SwitzerlandCorrespondence: Elisabeth Steinhagen-Thiessen, FRIEDE SPRINGER - Cardiovascular Prevention Center, Charité Universitätsmedizin, Berlin Campus Benjamin Franklin I Hindenburgdamm 30/Haus IIIA, Berlin, D-12203, Germany, Tel +49 30 450-543 775, Email elisabeth.steinhagen-thiessen@charite.deBackground: 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.Plain Language Summary: We report on the experiences living with high levels of lipoprotein a (Lp[a]) in the blood. This is a mostly inherited condition and is associated with an increased risk for heart attack, stroke, kidney failure and other cardiovascular events. Currently there is no medical treatment that directly lowers Lp(a) levels. People with high Lp(a) levels are advised to maintain a healthy diet and normal weight, avoid smoking, exercise regularly, and take cholesterol-reducing medication. While this lifestyle has no direct influence on Lp(a) levels, it helps lowering the overall cardiovascular risk. In the study, people with high Lp(a) and their relatives took part in an online discussion. Medical professionals attended but did not take an active part. Many participants struggled with managing their overall cardiovascular risk by a healthy lifestyle alone. The participants experienced lifestyle advice as conflicting, unclear and inconsistent and felt that their condition was an “invisible” disorder in their daily lives, which very few people around them, including medical professionals, knowing much about it. Physicians tended to treat patients after a harmful event rather than trying to help minimize the risk in the first place. Participants highlighted the need for trusted sources of information and for a greater awareness of Lp(a) among both the general public and healthcare professionals.Keywords: lifestyle advice, cardiovascular risk, lipoprotein(a), qualitative study, patient experience
