Global Heart Hub’s real-life data highlights need for patient-centered management of unhealthy cholesterol

First findings from multi-national patient research underpin the importance of integrating patient needs and preferences into strategies for managing unhealthy cholesterolFirst of its kind, community-led research by Global Heart Hub supports action to change the course of ASCVD, the leading cause of mortality worldwide1Initial analysis presented at ISPOR 2024, highlights findings from U.S. patients

GALWAY, Ireland, May 8, 2024 /PRNewswire/ — Global Heart Hub, the international alliance of heart patient organisations, announced today 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-centred care in the management of unhealthy cholesterol (low-density lipoprotein cholesterol or LDL–C) 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 hospitalised 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:Life factors such as work schedules and travel, and Out -of-pocket costs for medicines and healthcare;Additional insights from IPEC participants include:Having family support and proactively integrating lifestyle changes into daily routines made it easier to be adherent to treatment;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-recognised 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.

About IPEC

The Insights from Patients living with Elevated Cholesterol (IPEC) initiative is a multi-national patient-led data generation initiative designed to collect and deliver insights regarding the lived experiences of individuals whose LDL-C levels are not at target. IPEC is led by Global Heart Hub with the support of WomenHeart, USA; Lado A Lado Pela Vida, Brazil; and hearts4heart, Australia. The program is guided by an independent specialist multidisciplinary steering committee comprised of patient community representatives, clinicians and academics.

The first phase of insights gathering was launched in 2023 and collected information between November 2023 and March 2024 through semi-structured interviews among 50 people living in the United States, Brazil and Australia, and diagnosed with high LDL-C by a physician at least two years prior to the start of data collection. Half of participants (n=25) were individuals who had been hospitalised for an ASCVD event at least one year after their high LDL-C diagnosis. The objective of this phase of research was to gather perspectives on topics related to the diagnosis and burden of managing high LDL-C, disease awareness and treatment.

IPEC was made possible with the support of Novartis Pharma AG.

About Global Heart Hub

Global Heart Hub (GHH) is the first global non-profit organisation established to provide a voice for those living with or affected by cardiovascular disease. GHH is an alliance of over 119 heart patient organisations, aiming to unite patient groups from around the world. GHH’s aim is to unite patient groups from around the world and to raise awareness of heart disease and the challenges it presents in everyday life. GHH is a platform for heart patient organisations to share their views, learn from each other’s best practice, unite on common advocacy goals, and share resources. GHH aims to increase awareness and understanding of the many heart conditions that exist, improve patient outcomes, enhance quality of life, and optimise longevity and healthy ageing.

Reference:

Vasan RS, Enserro DM, Xanthakis V, Beiser AS, Seshadri S. Temporal Trends in the Remaining Lifetime Risk of Cardiovascular Disease Among Middle-Aged Adults Across 6 Decades: The Framingham Study. Circulation. 2022;145(17):1324-1338.

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SOURCE Global Heart Hub