The FINANCIAL -- Bristol-Myers Squibb Company, in collaboration with Blue Faery: The Adrienne Wilson Liver Cancer Association, a leading liver cancer patient advocacy organization, on October 4 announced the findings from a new survey exploring the experiences of caregivers of people living with early or advanced stage liver cancer in the U.S.
According to the caregivers surveyed, 90 percent wish there was more public awareness of the seriousness of a liver cancer diagnosis and 77 percent think liver cancer doesn’t get as much attention as other cancers.
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.
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. 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. 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.
“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. “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.
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.
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%).
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. HCC in adults is often diagnosed in later stages. 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.
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%).
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%).
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. 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%).