Experiences of people with elevated lipoprotein(a) and the impact on family and child screening.

Abstract

Background: Lipoprotein(a) [Lp(a)] is a common heritable causal cardiovascular risk factor, and understanding how patients use Lp(a) status for family screening is imperative. No studies to date have focused on the patient's perspective of their experiences.

Objective: To understand the experiences of people with elevated Lp(a), we investigated the factors that influence decision regret, optimism, anxiety, and family screening.

Methods: Participants with self-reported elevated Lp(a) completed an online survey assessing their experiences living with elevated Lp(a), including demographics, clinical and family history, barriers to testing, and, among the parent sub-cohort, the decision to test children's Lp(a).

Results: Among 1001 participants with completed surveys, most had no decision regret (70.7%) and minimal anxiety (71.7%) related to their elevated Lp(a). Almost half of participants (47.4%) experienced barriers to Lp(a) testing. Almost all participants (92.9%) reported they shared their Lp(a) results with their family. In a subgroup analysis of parents of children <18 years (n = 399), we investigated influences on the decision to test their children's Lp(a). Significant influences included age, optimism with current clinical care, and an interaction between decision regret and being clinically diagnosed with familial hypercholesterolemia (FH). Higher decision regret was associated with a lower probability of testing their children's Lp(a) for participants without a clinical diagnosis of FH.

Conclusion: We report novel experiences of people with elevated Lp(a), including levels of Lp(a)-specific anxiety, optimism, and decision regret regarding testing. Our results provide impetus for future research aimed at improving Lp(a) testing access, clinician education, and providing support to patients and families.