May 23, 2024 — Global Heart Hub, the international alliance of heart patient organizations, announced the first findings from their patient-led Insights from Patients living with Elevated Cholesterol (IPEC) data generation program. The findings, presented at ISPOR 2024, highlight several barriers that hinder patient-centerd care in the management of unhealthy cholesterol (low-density lipoprotein cholesterol or LDLC) and shed light on a persistent care gap in atherosclerotic cardiovascular disease (ASCVD). Additionally, the data underscores the importance of a comprehensive approach to optimally support patients.
Launched in August 2023, IPEC was designed to better understand the experiences, opinions, and needs of individuals whose cholesterol levels are not at target, including those who have been hospitalized for an ASCVD event. Lowering LDL-C levels plays a crucial role in reducing the risk of ASCVD events.
The ISPOR data analysis focused on understanding the experiences of participants from the United States through interviews with 16 patients. Key findings include:
· Lack of awareness and understanding among those interviewed about cardiac risks associated with high LDL-C;
· Prioritisation of the management of co-occurring medical conditions over the management of high LDL-C in individuals who have not had an ASCVD event allowing for less time and emphasis on risks of high cholesterol during discussions between healthcare providers and patients;
· High LDL-C was diagnosed as part of a routine health check-up in most instances; however, some people did not access health system services until signs and symptoms associated with ASCVD or a symptomatic co-occurring condition were experienced;
· Patients experienced challenges and barriers to adhere to lifestyle changes and medicines recommended by their healthcare provider, including:
o Life factors such as work schedules and travel, and
o Out -of-pocket costs for medicines and healthcare;
· Additional insights from IPEC participants include:
o Having family support and proactively integrating lifestyle changes into daily routines made it easier to be adherent to treatment;
o A general preference for treatment options that support adherence through a less frequent regime, having minimal side effects, and specific dosing through delivery methods such as injections or patches.
Neil Johnson, Executive Director, Global Heart Hub said: “ASCVD remains a significantly under-recognized disease that continues to grow on a global scale and deserves urgent attention as a public health priority. We believe it’s time to take a different approach in how we address unhealthy cholesterol given that it is a critical modifiable risk factor for ASCVD. Global Heart Hub is proud to be at the forefront in collecting patient experience data in this population. The IPEC data generation program provides an opportunity to input on and shape future LDL-C management strategies that integrate the patient perspective with the goal of shifting the current trajectory of the leading cause of heart attacks, strokes and death around the world.”
Celina Gorre, Chief Executive Officer, WomenHeart and IPEC Steering Committee member and ISPOR poster presenter: “With these findings from IPEC we have gained important insights directly from patients in the U.S. about their needs and preferences to support the delivery of optimal care. To truly address the consequences of unhealthy cholesterol levels and improve clinical care and patient outcomes, the patient voice must be integrated across the entire decision-making process. By developing a collective effort, we will mitigate some of the care gaps and ultimately create a healthier and more supportive environment for patients.”
View the ISPOR poster - https://globalhearthub.org/IPEC
The qualitative patient experience findings were also highlighted as a best-methods case example at the ISPOR Patient-Centered Research Summit co-located at this key international meeting.
The IPEC data generation program is a pillar of Invisible Nation, Global Heart Hub’s advocacy program created to bring attention to the more than 500 million people worldwide at risk for an ASCVD-related heart attack, stroke, or death1. As part of the evolution of Invisible Nation and supported by the global patient community, a Global Cholesterol Action Plan was created to continue to activate change to address unhealthy cholesterol levels.
For more information: www.globalhearthub.org
June 07, 2024 
