Findings presented at SGO 2024 show 87% of
respondents afraid of making long-term plans due to the possibility
of a shorter life expectancy
84% say dealing with treatment side effects has
negatively impacted their emotional well-being, and 94% worry about
LGSOC returning despite treatment
Verastem Oncology (Nasdaq: VSTM), a biopharmaceutical company
committed to advancing new medicines for patients with cancer,
today announced new results from the first-ever global LGSOC
Patient Impact Survey, developed with patient advocates and
community medical leaders to better understand and address the
complex needs and experiences of those living with low-grade serous
ovarian cancer (LGSOC). The results reveal a significant negative
impact of LGSOC on respondents’ mental and physical health, worry
and anxiety about cancer recurrence, side effects from treatment,
and disruption to aspects of daily life such as relationships,
family, work, and finances. These findings will be presented as a
poster presentation at the Society of Gynecologic Oncology (SGO)
Annual Meeting on Women’s Cancer, March 16-18 in San Diego,
California.
Key findings showed that most of those surveyed (87%) reported
being afraid to make long-term plans due to concerns about the
possibility of a shorter lifespan, and 60% reported a negative
impact of LGSOC on their plans to start a family or have more
children. Findings also highlight burdensome treatment concerns,
with 94% of respondents worried that their LGSOC would return
despite treatment and 84% reporting that a treatment side effect
has negatively impacted their emotional well-being. Other impacts
that were noted by survey respondents include, negative effects on
their mental health (73%), physical health (80%), overall quality
of life (73%), finances (54%) and primary relationships (46%).
“For many people, a diagnosis of LGSOC brings a set of unique
challenges. What is often not understood is that standard-of-care
chemotherapies are minimally effective and often accompanied by
severe side effects. Even if patients achieve remission, there is
still a high risk of the disease recurring,” said Dr. David
Gershenson, expert researcher in rare ovarian cancers, LGSOC
Patient Impact Survey Advisory Committee member and senior study
author. “These survey results reinforce what we’ve observed in
clinical practice ― that this disease takes a high toll on mental
health and quality of life and can disrupt relationships, family
life and financial security. Our efforts must focus on identifying
effective ways to help people cope with the worry, fear of
recurrence and treatment-related side effects that they experience
with LGSOC, alongside our work to develop treatments for this rare
and challenging cancer.”
LGSOC is a rare, highly recurrent, and fatal ovarian cancer
characterized by persistent tumor growth that requires continuous
treatment; 85% percent of people with LGSOC have their cancer come
back after remission. It often affects younger women and can be
diagnosed as early as the 20s and 30s, with a median age of
diagnosis around 45. Widespread awareness and understanding of
specific patient needs remain low. People with LGSOC have few
available treatment options, and there is no FDA-approved treatment
specifically for LGSOC.
“Having navigated my own journey with LGSOC and connecting with
so many others impacted by this disease, the findings of this
survey reinforce the sad but very real truth: the burdens of LGSOC
encompass every aspect of life after a diagnosis,” said Nicole
Andrews, Board of Directors Chair, STAAR Ovarian Cancer Foundation
and a member of the LGSOC Patient Impact Survey Advisory Committee.
“These findings underscore the critical need for comprehensive
support systems that address not only the medical challenges of
LGSOC but also the emotional, social, and financial burdens placed
on patients. The LGSOC journey is filled with uncertainty and
isolation, and it is only through holistic support that we can ease
this path and bolster hope for all those affected.”
Impacts of LGSOC on Daily Life
According to the survey, the impacts of LGSOC extend beyond
health concerns, affecting many aspects of a person’s life,
including their social and emotional well-being, employment and
finances.
- 61% of respondents found it hard to relate to other women their
age, and 56.5% didn’t feel they had anyone they could talk to about
LGSOC.
- 46% of respondents said LGSOC has negatively impacted their
romantic relationships (e.g., spouse, partner, dating), and 32%
reported negative impacts on relationships with family and
friends.
- 68% of respondents reported a negative impact on their jobs or
careers, with 52% missing work to manage their cancer and 23%
having to cut back on necessities to afford treatment.
- Biggest challenges reported by people with LGSOC were living
with the uncertainty of cancer recurrence (68%), having limited
treatment options (60%), and dealing with side effects from
treatment (52%).
The factors most closely associated* with a negative mental
health impact were difficulty with treatment-related side effects
(OR=5.0, 95% CI 1.46-17.0), constant worry about LGSOC (OR=4.03,
95% CI 1.53-10.62), financial challenges (OR=2.57, 95% CI
1.02-6.45), and having no one to talk to about their disease
(OR=2.55, 95% CI 1.02-6.40).
* Reported as an odds ratio (OR)
About the LGSOC Patient Impact Survey
The LGSOC Patient Impact Advisory Committee, which included the
STAAR Ovarian Cancer Foundation (STAAR), Cure Our Ovarian Cancer,
and the World Ovarian Cancer Coalition (Coalition), as well as
community medical leaders, supported by Verastem Oncology, worked
with The Harris Poll to conduct a survey on behalf of leaders in
the medical and advocacy communities. They surveyed women ages 18+
who have been diagnosed with LGSOC across 10+ countries. The survey
was conducted July 31st - August 29th, 2023, examining the
particular challenges with diagnosis and disease management
experienced by people living with LGSOC. A total of 186 women
completed surveys. Initial findings from the survey were announced
in November 2023. Women were recruited through patient advocacy
group websites, emails, newsletters, and social media. Questions
focused on perceived barriers to diagnosis and disease management,
financial concerns, impact on mental and physical health, and key
challenges and concerns.
Raw data were not weighted and are therefore only representative
of the individuals who completed the survey.
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 ± 7.1 percentage points using a 95%
confidence level. This credible interval will be wider among
subsets of the surveyed population 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.
To view survey details, including methodology, audience
demographics, additional data from this survey and more, click
here. Visit
https://letstalkaboutlgsoc.com/resources/patient-impact-survey/ for
more information.
For the purposes of this survey, the term LGSOC refers to people
diagnosed with low-grade serous carcinoma of the ovary or
peritoneum (the thin layer of tissue lining the abdomen).
About Low-Grade Serous Ovarian Cancer (LGSOC)
LGSOC is a highly recurrent, chemotherapy-resistant cancer,
associated with slow tumor growth and high mortality rate.
Approximately 6,000-8,000 women in the U.S. and 80,000 worldwide
are living with this disease. LGSOC is most often diagnosed in
women between the ages of 45-55 and affects a younger patient
population with bimodal peaks at ages 20-30 and 50-60 years of age,
and has a median survival of approximately ten years. The majority
of patients experience severe pain and complications as the disease
progresses. While chemotherapy is the standard of care for this
disease, there are no treatments specifically approved by the U.S.
Food and Drug Administration to treat LGSOC and limited other
treatment options are available.
About Verastem Oncology
Verastem Oncology (Nasdaq: VSTM) is a late-stage development
biopharmaceutical company committed to the development and
commercialization of new medicines to improve the lives of patients
diagnosed with cancer. Our pipeline is focused on novel small
molecule drugs that inhibit critical signaling pathways in cancer
that promote cancer cell survival and tumor growth, including
RAF/MEK inhibition and FAK inhibition. For more information, please
visit www.verastem.com and follow us on LinkedIn.
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Corporate Communications and Investor Relations
media@verastem.com
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