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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Contacts
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Vice President, Corporate Communications and Investor Relations
media@verastem.com
