- First findings from multi-national patient research
underpin the importance of
integrating patient needs and preferences into
strategies for managing unhealthy
cholesterol
- First of its kind, community-led research by Global Heart
Hub supports action to change the course
of ASCVD, the leading cause
of mortality worldwide1
- Initial 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