- Initial findings from a multinational patient study confirm the importance of Integrate Reflect patient needs and preferences in your strategy to manage unhealthy cholesterol
- Global Heart Hub's first-of-its-kind community-driven research supports action to change the course of the world. ASCVD, main cause of death World wide1
- Initial analysis presented at ISPOR 2024 highlights findings from US patients
galway Ireland, May 8, 2024 /PRNewswire/ — Global Heart Hub, an international federation of heart patient organizations, today announced the results of its first patient-led study. Insights from patients living with high cholesterol (IPEC) data generation program. The findings, presented at ISPOR 2024, highlight several barriers to patient-centered care in the management of unhealthy cholesterol (low-density lipoproteins). cholesterol or LDL-C) and highlights persistent treatment gaps in atherosclerotic cardiovascular disease (ASCVD). Furthermore, this data highlights the importance of a comprehensive approach to optimally support patients.
Release year August 2023IPEC was designed to better understand people's experiences, opinions and needs. People whose cholesterol levels have not reached their target (people like the following) Hospitalized due to ASCVD event. Reducing LDL-C levels plays an important role in reducing the risk of ASCVD events.
ISPOR data analysis focused on understanding participants' experiences. US Through interviews with 16 patients. Key findings include:
- There is a lack of awareness and understanding among those interviewed about the cardiac risks associated with high LDL-C.
- Prioritization Management of co-occurring medical conditions is more important than management of the advanced disease. LDL-C In individuals who do not have the disease ASCVD An event that can save time and focus on the risk of high cholesterol during discussions between healthcare professionals and patients.
- high LDL-C In most cases, it was diagnosed as part of a routine medical examination. However, some people did not utilize health system services until they developed relevant signs and symptoms. ASCVD or symptomatic co-occurring symptoms were experienced.
- Patients experienced the following challenges and barriers when adhering to lifestyle changes and medications recommended by their healthcare provider:
- life factors such as work schedules and travel;
- Self-pay for medicines and medical expenses.
- Additional insights from IPEC participants include:
- Having the support of my family and actively incorporating lifestyle changes into my daily routine made it easier to adhere to treatment.
- a Treatment options that have minimal side effects, specific doses via delivery methods such as injections or patches, and that support adherence infrequently are generally preferred.
neil johnsonExecutive Director of Global Heart Hub. “ASCVD remains an under-recognized disease that continues to rise globally and deserves urgent attention as a public health priority. Given this, we believe it is time to take a different approach on how to address this.'' Global Heart Hub is proud to be at the forefront of collecting patient experience data in this population and is proud to be at the forefront of collecting patient experience data in this population and Data generation programs provide an opportunity to input and shape future LDL-C management strategies that integrate patient perspectives and goals. It is about changing the current trajectory of the leading cause of heart attacks, strokes and deaths around the world. ”
Serena GoreCEO, WomenHeart and IPEC Steering Committee Member, ISPOR Poster Presenter: “These findings from IPEC allow us to gain critical insight directly from U.S. patients about their needs and preferences to support the delivery of optimal care. To truly address the impact and improve clinical care and patient outcomes, the patient voice is critical and must be integrated throughout the decision-making process. By developing collaborative efforts, we can alleviate gaps in care and ultimately create a healthier and more supportive environment for patients. ”
View the ISPOR poster – https://globalhearthub.org/IPEC
Qualitative patient experience findings were also highlighted as examples of best practice at the ISPOR Patient-Centered Research Summit, which was held concurrently with this important international conference.
The IPEC data generation program is invisible nation, global heart hub Advocacy program created to bring awareness to the more than 500 million people worldwide who are at risk of ASCVD-related heart attack, stroke, or death1. As part of the evolution of invisible nation and supported by a global patient community. World Cholesterol Action Plan Created to continuously activate changes to address unhealthy cholesterol levels.
About IPEC
The Insights from High Cholesterol Patients (IPEC) initiative is a multinational, patient-driven data collection aimed at collecting and providing insight into the real-life experiences of individuals whose LDL-C levels are below target. It is a generation initiative. IPEC is led by the Global Heart Hub with support from WomenHeart. united states of america; Lado a lado pera vida, Brazil; and Hearts 4 Hearts, Australia. The program is guided by an independent multidisciplinary steering committee comprised of patient community representatives, clinicians, and academics.
The first phase of insight gathering began in 2023, with information collected through 2023. November 2023 and March 2024 Through semi-structured interviews with 50 people living in US, Brazil and Australia, diagnosed with high LDL-C by a physician at least 2 years before the start of data collection. Half of the participants (n = 25) were at least 1 year after high LDL-C diagnosis when he was hospitalized for ASCVD. The purpose of this phase of the study was to gather perspectives on the burden of diagnosis and management of high LDL-C, topics related to disease recognition and treatment.
IPEC was made possible with support from Novartis Pharma AG.
About Global Heart Hub
Global Heart Hub (GHH) is the first global nonprofit organization created to represent the voice of people living with or affected by cardiovascular disease. GHH is a coalition of more than 119 heart disease patient organizations that aims to unite patient groups around the world. GHH's purpose is to unite patient groups around the world and raise awareness of heart disease and the challenges it poses in daily life. GHH is a platform for heart disease patient organizations to share their voices, learn from each other's best practices, unite around 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 optimize longevity and healthy aging.
reference:
- Vasan RS, Enserro DM, Xantakis V, Beiser AS, Seshadri S. Temporal trends in remaining lifetime risk of cardiovascular disease in middle-aged adults over 60 years: The Framingham Study. Circulation. 2022;145(17):1324-1338.
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Source Global Heart Hub