Global Patient Survey Results Reveal Significant Negative Impact on Social, Emotional and Mental Well-Being for People Living with Low-Grade Serous Ovarian Cancer
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Findings presented at SGO 2024 show
Key findings showed that most of those surveyed (
“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;
“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.
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61% of respondents found it hard to relate to other women their age, and56.5% 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), and32% reported negative impacts on relationships with family and friends. -
68% of respondents reported a negative impact on their jobs or careers, with52% missing work to manage their cancer and23% 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,
* 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
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
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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Source: Verastem Oncology
FAQ
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