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Global Heart Hub's Insights from Patients living with Elevated Cholesterol reveals the Importance of Shared Decision-Making
Participants have highlighted the importance of personalised care plans in managing hypercholesterolemia. Using simple language and clear explanations of the risks associated with unmanaged LDL-C cholesterol level encourages patients to take their health seriously. A collaborative and supportive approach between HCPs and patients is needed to develop care plans, considering individual circumstances and lifestyle factors, ensuring realistic and measurable goals. Discussions on treatment options should focus on patient preferences such as convenience related to the mode and timing of administration. The ultimate goals described by participants are to improve health outcomes, prevent heart-related complications and maintain or enhance quality of life.
The study also identified structural barriers to effective shared decision-making, including time constraints during appointments, administrative burdens and access issues. Overcoming these challenges will require policy changes driven by partnerships between patient advocacy organisations and medical societies.
Insights from Patients living with Elevated Cholesterol ."
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More information about IPEC and the ESC poster:
The IPEC data generation program is a pillar of advocacy program created to bring attention to the more than 500 million people worldwide at risk for an ASCVD-related heart attack, stroke, or death . As part of the evolution of and supported by the global patient community, a was created to continue to activate change to address unhealthy cholesterol levels.
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 Hearts 4 Heart, 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. Approximately half of participants (n=22) were individuals who had been hospitalised for an atherosclerotic cardiovascular disease (ASCVD) event at least one year after their diagnosis of high LDL-C. 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.
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 120 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.
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