This is despite the fact that the incidence of liver cancer in the U.S. has more than tripled since 1980, and hepatocellular carcinoma (HCC) - the most common type of liver cancer - is the fastest-growing cause of cancer death in the U.S.(2,3,4)
Prior to diagnosis, many caregivers (43%) of patients with advanced stage disease did not think their loved one was at risk for liver cancer, and nearly half (47%) said they were aware of liver cancer but not very knowledgeable.1 In fact, before their loved one was diagnosed, nearly three-quarters of these caregivers (72%) thought that heavy alcohol use was the most common risk factor for liver cancer.1 However, the reality is that chronic infection with Hepatitis B virus (HBV) or Hepatitis C virus (HCV) is the most common risk factor for liver cancer.(4,5)
"Before my sister was diagnosed with HCC, I thought the only cause of liver cancer was alcoholism," said Andrea Wilson, President and Founder, Blue Faery: The Adrienne Wilson Liver Cancer Association. The Liver Cancer Outlook survey found that this is common among liver cancer caregivers, with only one in five (20%) of those surveyed being familiar with risk factors or the signs and symptoms of liver cancer.(1) "These survey results reinforce the need to decrease the stigma surrounding the disease and to increase awareness, research efforts and resources available to patients and their caregivers."
The survey of 90 U.S. caregivers of people living with early stage (n=30) and advanced stage (n=60)1 liver cancer identified a number of insights into the caregiver experience, including:
- Limited familiarity with the disease : Few caregivers said they were familiar with risk factors (17%) or the signs and symptoms of the disease (12%), prior to their loved one's diagnosis.(1)
- Lack of information about treatment options and/or areas of research: More than half of caregivers of people with advanced stage liver cancer surveyed (58%) admit it's hard to understand what treatment options are available to their loved one. Nearly all (95%) of these caregivers believe more information needs to be available about different types of liver cancer treatment options and/or areas of research, and eight in ten (82%) wish they knew where to go for this information.(1)
- The impact of stigma: Half of the caregivers (56%) agree there is a stigma (i.e., shame) associated with liver cancer and that these negative perceptions about liver cancer make it difficult to find support (60%).(1)
To address the needs these caregivers identified in the survey and in recognition of Liver Cancer Awareness Month (October), Bristol-Myers Squibb and Blue Faery have launched LiverCancerOutlook.com, a dedicated website offering information about liver cancer and providing links to additional resources for patients and caregivers.
"As a leader in oncology, Bristol-Myers Squibb strives every day to understand and address the unmet needs of patients and their caregivers, including those within the liver cancer community," said Awny Farajallah, M.D., Vice President, Head of U.S. Medical Oncology, Bristol-Myers Squibb. “The Liver Cancer Outlook survey results underscore the importance of better educating patients and caregivers, and we are proud to collaborate with Blue Faery to help provide much-needed information and hope to those who are living with the daily challenges of the disease."
In 2017, it is estimated there will be approximately 41,000 new diagnoses of liver and intrahepatic bile duct cancers in the U.S. and an estimated 29,000 people will die from the disease.(2) HCC is the most common type of primary liver cancer, cancer that starts in the liver.(6) In addition to HBV and HCV infections, gender, race and ethnicity, cirrhosis, obesity, type 2 diabetes, certain genetic syndromes and non-alcoholic steatohepatitis (NASH) are common risk factors.(5,7) HCC in adults is often diagnosed in later stages.(8,9) A patient's prognosis depends on factors such as the stage of the cancer (i.e., tumor size, how much of the liver is affected, whether the cancer has spread), how well the liver is working and the patient's general health.(10)
The survey uncovered important insights into the attitude and mindset of caregivers. The survey showed that caregiver outlook for their loved one’s future is dependent on the stage of the disease.(1) In fact, caregivers of advanced stage liver cancer patients are significantly more likely than those caring for early stage patients to report negative feelings (93% vs. 60%) such as helpless (50% vs. 17%), sad (50% vs. 7%), frustrated (40% vs. 13%), and angry (23% vs. 3%).(1)
A majority of these caregivers of advanced stage patients acknowledge that a lot of progress is being made in liver cancer research (63%) and that they would feel hopeful about additional treatment options becoming available (58%).(1)
Research efforts are ongoing, and in the past year additional options have become available for patients with advanced liver cancer. Nearly all caregivers of advanced stage patients (97%) wish they knew about the latest developments in liver cancer treatment or areas of research.(1) The most commonly reported treatment option/area of research that these caregivers are interested in learning more about is Immuno-Oncology (93%), followed by targeted therapy (88%), tumor embolization (85%), tumor ablation (83%), liver cancer surgery (83%), chemotherapy (83%), and radiation therapy (78%).(1)
About Liver Cancer Outlook
The Liver Cancer Outlook survey was conducted online by Bryter on behalf of Bristol-Myers Squibb between July 24 and August 31, 2017 in the U.S., of 90 caregivers of people living with early stage (n=30) and advanced stage (n=60) liver cancer. Only caregivers of patients with active disease were included in the survey. Upon completion of the survey, the data has been tabulated and significance tested at the 95% confidence interval.(1) Bryter abides by the rules and guidelines of the Market Research Society. A full methodology is available upon request.
LiverCancerOutlook.com was developed by Bristol-Myers Squibb in collaboration with Blue Faery: The Adrienne Wilson Liver Cancer Association. A dedicated website, LiverCancerOutlook.com provides information and resources for people with liver cancer, their caregivers and their loved ones.
About Blue Faery: The Adrienne Wilson Liver Cancer Association
Founded in 2002, Blue Faery’s mission is to prevent, treat and cure primary liver cancer, specifically HCC, through research, education and advocacy. Andrea Wilson started Blue Faery in honor of her sister Adrienne, who died of HCC only 145 days after her diagnosis.
Blue Faery was compensated for its time spent as an advisor on the Liver Cancer Outlook Survey and related content.
About Bristol-Myers Squibb
Bristol-Myers Squibb is a global biopharmaceutical company whose mission is to discover, develop and deliver innovative medicines that help patients prevail over serious diseases.
1. Bristol-Myers Squibb. Bryter. U.S. Survey of Liver Cancer Caregivers. July 24, 2017 - August 31, 2017.
2. American Cancer Society. Cancer Facts & Figures. 2017. Atlanta: American Cancer Society; 2017.
3. Islami F, Miller K, Siegel R, et al. Disparities in Liver Cancer Occurrence in the United States by Race/Ethnicity and State. Ca Cancer J Clin 2017 Jul 8;67(4):273-289.
4. Mittal S and El-Serag HB. Epidemiology of hepatocellular carcinoma: consider the population. J Clin Gastroenterol. 2013 Jul; 47 Suppl:S2-6.
5. American Cancer Society. Liver Cancer Risk Factors. https://www.cancer.org/cancer/liver-cancer/causes-risks-prevention/risk-factors.html. Accessed August 8, 2017.
6. American Cancer Society. What is Liver Cancer? https://www.cancer.org/cancer/liver-cancer/about/what-is-liver-cancer.html. Accessed September 21, 2017.
7. Dhanasekaran R, Limaye A and Cabrera R. Hepatocellular carcinoma: current trends in worldwide epidemiology, risk factors, diagnosis, and therapeutics. Hepat Med. 2012 May 8;4:19-37.
8. Mlynarsky L, Menachem Y and Shibolet O. Treatment of hepatocellular carcinoma: Steps forward but still a long way to go. World J Hepatol. 2015 Mar 27;7(3):566-74.
9. Allaire M and Nault JC. Advances in management of hepatocellular carcinoma. Curr Opin Oncol. 2017 Jul;29(4):288-295.
10. National Cancer Institute. Adult Primary Liver Cancer Treatment (PDQ) – Patient Version. https://www.cancer.gov/types/liver/patient/adult-liver-treatment-pdq. Accessed September 28, 2017.