Understanding the Patient Experience With High Cholesterol in the United States: A Patient-Community-Led Qualitative Study

Speaker(s)

Johnson N1, Vandigo J2, Carvalho F3, Gorre C4, Hall T5, Hennessy S6, Kazi DS7, Kotseva K8, Petrie P9, Kelly D1, Oehrlein E10
1Global Heart Hub, Galway, Connacht, Ireland, 2Applied Patient Experience, LLC, Greensburg, PA, USA, 3Lado A Lado Pela Vida, São Paulo, São Paulo Estado, Brazil, 4WomenHeart, Washington, DC, USA, 5hearts4heart, East Perth, Western Australia, Australia, 6University of California, San Francisco, CA, USA, 7Harvard Medical School, Boston, MA, USA, 8University of Galway, Galway, Connacht, Ireland, 9HEART UK & FH Europe, Edinburgh, Lothian, UK, 10Applied Patient Experience, LLC, Washington, DC, USA

Presentation Documents

OBJECTIVES: Atherosclerotic cardiovascular disease (ASCVD) accounts for 85% of all cardiovascular-related deaths. An important risk factor of ASCVD is elevated low-density lipoprotein cholesterol (LDL-C). Established treatments and lifestyle modifications to lower LDL-C exist, and an estimated 80% of premature ASCVD events are preventable. Despite this, ASCVD continues to be the leading cause of mortality worldwide. This patient-community-led qualitative study examined the experiences of people living with high LDL-C to identify areas to improve clinical care and patient outcomes and inform health policy.

METHODS: Forty-six individuals in Brazil, Australia, and the United States (US) with confirmed high cholesterol participated in 60-minute semi-structured interviews. Half of the participants were required to have had a prior hospitalization for ASCVD. Interview transcripts were coded by two analysts using a grounded theory approach. This abstract describes emerging themes among US participants.

RESULTS: Among the 16 US participants, mean age was 51.3 (SD: 10.1), mean age at diagnosis was 38.1 (SD: 7.4), and 69% were female. Family spillover and time with loved ones were outcomes of importance. Participants expressed a desire for a therapy that did not require daily dosing. Despite this desire, most participants reported being adherent to their therapy. Level of engagement with the care team was commonly described as a critical barrier to therapy, even among individuals experiencing an ASCVD event, as high cholesterol is seen to compete with more symptomatic conditions and is not the primary concern during clinical visits. Participants reported difficulties with access to treatment due to their age, gender, and race. Rural location, lack of in-network providers, and lack of provider availability also created barriers.

CONCLUSIONS: This study highlights that elements of care that people with high cholesterol value may be overlooked in claims-based analyses. Additional support is urgently needed to ensure people receive timely diagnosis and treatment initiation for hypercholesterolemia.

Code

PCR201

Topic

Patient-Centered Research

Topic Subcategory

Adherence, Persistence, & Compliance, Patient Behavior and Incentives

Disease

Cardiovascular Disorders (including MI, Stroke, Circulatory), No Additional Disease & Conditions/Specialized Treatment Areas