Multiple Years for Diagnosis, Limited Treatment
Options, Treatment Side Effects, and Cancer Recurrence Main
Concerns of Respondents
Survey Developed Through a Global Collaboration
Among Patient Advocacy Groups and Medical Leaders to Uncover and
Address the Urgent Needs of Patients
Verastem Oncology, (Nasdaq: VSTM), a biopharmaceutical company
committed to advancing new medicines for patients with cancer,
today announced results of the first-ever LGSOC Patient Impact
Survey that reveal the particular challenges with diagnosis,
disease management and mental, physical, and emotional well-being
experienced by people living with low-grade serous ovarian cancer
(LGSOC)*.1 This multi-national, online survey was conducted by The
Harris Poll on behalf of the LGSOC Patient Impact Advisory
Committee – a global collaboration among patient advocacy groups,
including STAAR Ovarian Cancer Foundation (STAAR), Cure Our Ovarian
Cancer and the World Ovarian Cancer Coalition (Coalition) as well
as leaders in the medical community – with the aim to better
understand and address the needs of those living with this rare and
difficult to treat disease.
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the full release here:
https://www.businesswire.com/news/home/20231107926726/en/
The biggest challenges women with LGSOC
face in managing their condition (Graphic: Business Wire)
LGSOC is a rare, highly recurrent ovarian cancer associated with
slow but persistent tumor growth and a high mortality rate and is
known to be relatively resistant to chemotherapy.2,3,4 In 2014,
LGSOC was classified as a separate disease compared to the more
common high-grade serous ovarian cancer (HGSOC) by the World Health
Organization, yet awareness and knowledge of the disease remains
low.5 Eighty-five percent of people with LGSOC have their cancer
come back after remission.4 Few treatment options are available for
LGSOC and no treatments specifically for LGSOC have been approved
to date.6
“Not only is LGSOC a rare disease, its classification as a
distinct type of ovarian cancer was established within the last 10
years. With no medicines specifically approved by the U.S. Food and
Drug Administration for LGSOC, along with limited research and
published data about the patient experience and its impact,
managing this disease is challenging for healthcare professionals
and patients. This survey is an important collective effort to
gather valuable insights and opinions to help better serve those
living with LGSOC,” said Dr. David Gershenson, expert researcher in
rare ovarian cancers and LGSOC Patient Impact Advisory Committee
member. “As a physician dedicated to finding better ways to manage
LGSOC, I witness how the long journey to diagnosis and the
uncertainty of this disease takes a toll on my patients and their
loved ones. These survey results underscore the urgency of
educating on this unique form of ovarian cancer and provide
important information to guide that effort.”
Delayed Diagnoses and Low Awareness
Results from the survey revealed the challenges people with
LGSOC face in obtaining a timely and accurate diagnosis. Among the
81% of participants surveyed who experienced disease symptoms, it
took an average of nearly three years to get an accurate diagnosis
and most reported their path to diagnosis as difficult (73%) or
frustrating (68%).1 Nearly seven-in-ten (68%) people surveyed who
experienced symptoms, experienced a misdiagnosis and nearly
two-thirds (66%) reported having their symptoms dismissed by a
healthcare provider (HCP).1 Younger respondents (ages 18-49)** were
more likely than their older peers (age 50+) to report that their
symptoms were misdiagnosed (77% vs. 56%) and to feel that their
symptoms were dismissed by their HCP (52% strongly agree vs. 32%).1
LGSOC often affects younger women compared to the more common
high-grade serous ovarian cancer (HGSOC), with a median age at
diagnosis between 45-55.3
Nearly all those surveyed (99%) had no awareness of LGSOC prior
to diagnosis, and 60% did not feel that their HCP was “very
knowledgeable” about this rare cancer.1 When it comes to educating
about LGSOC, 87% want others to know that symptoms can be easily
misdiagnosed as another disease, and 82% feel they should know that
it’s important to listen to your body and seek medical attention as
soon as possible.1
Challenges with Disease Management, Uncertainty and
Anxiety
In the survey, 60% of respondents reported that one of the
biggest challenges in managing their disease is that their
treatment options are limited, with most (90%) feeling like they
are getting the “treatment leftovers” instead of regimens studied
in LGSOC.1 More than half (52%) reported experiencing side effects
from treatment as a challenge and 25% reported having to pause or
stop treatment because they couldn’t tolerate the side
effects.1
The data also revealed the impact on respondents of navigating a
recurrent disease with limited treatment options. Nearly
seven-in-ten (68%) respondents reported that their biggest
challenge is living with uncertainty that their cancer will return,
more than two-in-five (41%) feel like their lives revolve around
their cancer, and nearly half (48%) reported that their biggest
challenge is experiencing anxiety or worry.1
“Since my LGSOC diagnosis, it has been so important to have my
community around me. Although LGSOC is classified as a rare cancer,
we have seen this community come together to provide support for
each other, raise awareness of symptoms, and improve outcomes,”
said Nicole Andrews, Board of Directors Chair, STAAR Ovarian Cancer
Foundation and a member of the LGSOC Patient Impact Advisory
Committee. “What this survey reveals is critical, because there are
too many women like me who have had to navigate this experience on
their own, with very few resources and low awareness of the
disease. Having this measurable, actionable data that sheds new
light on the challenges we face because of LGSOC is an important
step toward education and awareness that can hopefully improve
care.”
About the LGSOC Patient Impact Survey
The LGSOC Patient Impact Advisory Committee, 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 186 women ages 18+ who have been diagnosed with LGSOC
across 10+ countries. The survey was conducted July 31st - August
29th, 2023. Raw data were not weighted and are therefore only
representative of the individuals who completed the survey.
Additional data from the survey were submitted to an upcoming
medical congress.
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, survey data 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).
**Caution: small sample size (n<100). Results should be
interpreted as directional.
About Low-Grade Serous Ovarian Cancer (LGSOC)
Low-grade serous ovarian cancer (LGSOC) is a highly recurrent,
chemotherapy-resistant cancer, associated with slow tumor growth
and high mortality rate.3 Approximately 6,000 women in the U.S. and
80,000 worldwide are living with this disease.7 Mutations in the
KRAS gene are present in 30% of cases of LGSOC.8,9 LGSOC is most
often diagnosed in women between the ages of 45-55 years and has a
median survival of approximately ten years.7 The majority of
patients experience severe pain and complications as the disease
progresses. Chemotherapy is one of the preferred treatments for
this disease, and there are limited treatment options currently
available.7
About Verastem Oncology
Verastem Oncology (Nasdaq: VSTM) is a development-stage
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 focal adhesion kinase (FAK) inhibition. For
more information, please visit www.verastem.com.
1 LGSOC Patient Impact Survey Research Findings. Harris Poll.
2023. 2 WHO Classification of Tumours, 5 Edition, Volume 4: Female
Genital Tumours. https://publications.iarc.fr/592 3 Grisham, R. Low
Grade Serous Carcinoma of the Ovary. Oncology. 2016. 30(7):650-652.
https://www.cancernetwork.com/view/low-grade-serous-carcinoma-ovary.
Accessed March 2023. 4 Corrado G, Salutari V, Palluzzi E, Distefano
MG, Scambia G, Ferrandina G. Optimizing Treatment in Recurrent
Epithelial Ovarian Cancer. Expert Rev Anticancer Ther. 2017;
17:1147-1158. doi: 10.1080/14737140.2017.1398088. 5 Kurman RJ,
Carcangiu ML, Herrington CS, Young RH, editors. WHO Classification
of Tumors of Female Reproductive Organs, 4th ed; 2014. 6 Ovarian
Cancer Guidelines. National Comprehensive Cancer Network.
https://www.nccn.org/professionals/physician_gls/pdf/ovarian.pdf.
Accessed October 2023. 7 Slomovitz B, Gourley C, Carey S. M,
Malpica A, Shih I, Huntsman D, et al. Low-grade serous ovarian
cancer: State of the science. Gynecol Oncol. 2020;156(3):715-725.
https://doi.org/10.1016/j.ygyno.2019.12.033. 8 Timar J, Kashofer K.
Molecular epidemiology and diagnostics of KRAS mutations in human
cancer. Cancer and Metastasis Reviews. 2020;39:1029–1038.
https://doi.org/10.1007/s10555-020-09915-5. 9 Baines T. A, Xu D,
Der C. J. Inhibition of RAS for cancer treatment: the search
continues. Future Medicinal Chemistry. 2011;3(14):1787–1808.
https://doi.org/10.4155/fmc.11.121.
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version on businesswire.com: https://www.businesswire.com/news/home/20231107926726/en/
Media Contact: Lisa Buffington Corporate
Communications +1 (781) 292-4205 lbuffington@verastem.com
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