Findings reveal people living with hemophilia
secretly carry the emotional burdens of the disease and report
mental health challenges including anxiety and depression.
Data also uncovers a troubling disconnect
between the desire of those living with hemophilia to direct the
course of their treatment, with lack of inclusion from their
providers in that process.
NEW
YORK, Oct. 10, 2023 /PRNewswire/ -- The
Harris Poll, a Stagwell (NASDAQ: STGW) agency, announced today the
findings from a first-of-its-kind global hemophilia survey –
'Hemophilia Life Stages and Changes Global Survey' – sponsored by
Sanofi. The findings deliver critical insights from patients,
caregivers, and hematologists on challenges they face in their
daily lives as they live or care for those with hemophilia across
important life stages. The Harris Poll and Sanofi conducted the
survey of more than 2,700 participants across four continents and
11 countries to gain a greater understanding of the current state
of hemophilia care globally, the evolving needs of this community
over their lifetime, and the areas that require
improvement.
The goal is to drive action and dialogue
that leads to improved care for people with hemophilia.
"The robust scope and multiple, diverse perspectives included in
this research enable us to paint a detailed picture of what it's
like to live with and manage this debilitating life-long condition
throughout key aspects, milestones, and life events," said
Kathy Steinberg, Vice President of
Media and Communications Research at The Harris Poll. "And that
picture of life with hemophilia reveals unique challenges, impacts,
and unmet needs that point to how patient care and outcomes could
be improved for this population."
The findings show a significant communication gap between
patients and their caregivers and providers about the array of
physical and mental burdens of the disease. Over half of patients
(51%) at least once a week hide their symptoms from others and as
many as 68% avoid telling their friends for worry of being treated
differently. The emotional weight of hemophilia is having a mental
impact as well with 59% of patients feeling anxiety at least once a
week and three quarters (75%) of hematologists reporting that
their patients often feel depressed about their hemophilia.
The research also uncovered a troubling disconnect between
patients' overwhelming desire to play a more active role in the
course of their treatment (83%) and those who feel their providers
adequately include them in the process. Only 35% of patients
surveyed globally believed that their healthcare provider involved
them in discussions regarding their treatment and considers their
concerns when it comes to treatment while 84 percent wish for more
treatment options.
GLOBAL AND GENERATIONAL DISTINCTIONS
The
research also uncovered some surprising differences across
countries regarding the ages at which hemophilia patients receive
care, ease of emotional impact discussions, and sentiments related
to hiding symptoms.
- In the United States, the vast
majority of caregivers (91%) cared for their child, of which most
(94%) were under the age of 18. Only one percent were caring for an
adult child (age 25-34).
- In Japan, by stark contrast,
only three percent of caregivers cared for a child – among whom 67%
care for a child under the age of 18.
- In China, almost all (98%)
healthcare providers wish it was easier to discuss the emotional
impact of living with hemophilia with their patients, while in
the United States that sentiment
drops down to 78%.
- Attitudes in Europe are much
different than in the U.S. about avoiding telling friends about the
disease for worry of being treated differently. In Europe, 80% of German respondents and 74% of
UK respondents feel the need to hide their disease while only 41%
of American respondents express the same concern.
The results of the survey provide valuable insights for
caregivers, patients living with hemophilia, healthcare
professionals, policymakers, and patient organizations worldwide.
The goal is for results to drive action and dialogue that
ultimately leads to new, innovative solutions to improve care for
people living with hemophilia.
"As a company deeply committed to the global hemophilia
community, Sanofi wanted to listen to the voices of people from
around the world who are impacted by this disease at various stages
of their life, to better understand their needs," said Alaa Hamed, MD, MPH, MBA, Global Head of Medical
Affairs, Rare Diseases and Rare Blood Disorders at Sanofi. "Our
mission is to advance a model of care that provides the right
support at the right time to serve this community so that people
with hemophilia can focus less on living with this disease, and
more on living the lives they choose."
Full survey details, including methodology, audience
demographics, global survey results, and more:
https://bit.ly/3ZGeiJC
Methodology for Hemophilia Life Stages and Changes Global
Survey
The research was conducted online in
the United States, United Kingdom, Germany, France, Italy, Spain,
Japan, India, Canada, Australia, and China by The Harris Poll
on behalf of Sanofi among 679 HCPs (health care providers
whose primary medical specialty is hematology and see/treat 2+
patients with hemophilia per month), 950 patients (adults 18+
diagnosed with hemophilia), and 1,080 caregivers (adults 18+ who
provide care or support to a friend or family member with
hemophilia). The survey was conducted February 27 – April
10, 2023.
Raw data were not weighted to adjust for geodemographics, except
to provide each country equal share of voice, so thus are therefore
only representative of the individuals who completed the survey.
Respondents for this survey were selected from among those who have
agreed to participate in our surveys.
The sampling precision of Harris online polls is measured by using a
Bayesian credible interval. For this study, the sample data is
accurate to within + 4.7 percentage points for HCPs, + 3.3
percentage points for patients, and + 3.0 percentage points
for caregivers using a 95% confidence level. This credible interval
will be wider among subsets of the surveyed populations of
interest.
All sample surveys and polls, whether or not they use
probability sampling, are subject to other multiple sources of
error which are most often not possible to quantify or estimate,
including, but not limited to coverage error, error associated with
nonresponse, error associated with question wording and response
options, and post-survey weighting and adjustments. Responses may
not add up to 100% due to weighting, computer rounding and/or the
acceptance of multiple responses.
About The Harris Poll
The Harris Poll is a global consulting and market research firm
that strives to reveal the authentic values of modern society to
inspire leaders to create a better tomorrow. It works with clients
in three primary areas: building twenty-first-century corporate
reputation, crafting brand strategy and performance tracking, and
earning organic media through public relations research. One of the
longest-running surveys in the U.S., The Harris Poll has tracked
public opinion, motivations and social sentiment since 1963, and is
now part of Stagwell, the challenger holding company built to
transform marketing.
About Stagwell
Stagwell (NASDAQ: STGW) is the challenger network built to
transform marketing. We deliver scaled creative performance for the
world's most ambitious brands, connecting culture-moving creativity
with leading-edge technology to harmonize the art and science of
marketing. Led by entrepreneurs, our 13,000+ specialists in 34+
countries are unified under a single purpose: to drive
effectiveness and improve business results for their clients. Join
us at www.stagwellglobal.com.
About Sanofi
We are an innovative global healthcare company, driven by one
purpose: we chase the miracles of science to improve people's
lives. Our team, across some 100 countries, is dedicated to
transforming the practice of medicine by working to turn the
impossible into the possible. We provide potentially life-changing
treatment options and life-saving vaccine protection to millions of
people globally, while putting sustainability and social
responsibility at the center of our ambitions. Sanofi is listed on
EURONEXT: SAN and NASDAQ: SNY. Learn more at www.sanofi.com.
About Hemophilia
Hemophilia is a rare, lifelong
condition in which the ability of a person's blood to clot properly
is impaired, leading to excessive bleeds and/or spontaneous bleeds
into joints, muscles, and soft tissues that can result in joint
damage, and chronic pain, and potentially impact quality of life.
The severity of hemophilia is determined by the level of clotting
factor activity in a person's blood, and there is a negative
correlation between risk of bleeding and factor activity levels.
Globally, over 1 million people are estimated to have
hemophiliai, divided over the different types, and
sustainable access to diagnosis and treatment remains a challenge
for a large number of these patients.
CONTACT:
Sarah Arvizo
pr@stagwellglobal.com
REFERENCES
i https://wfh.org
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