Feb 26, 2020
By Aaron Tallent, ASCO Communications
Understanding how Americans view and what they know about cancer can be both enlightening and surprising. In 2016, ASCO recognized there was no readily available research on Americans’ attitudes and perceptions about cancer from year to year. Under the Society’s mission of research and education, ASCO endeavored to undertake a new, national initiative to learn more about what Americans know and believe about cancer, cancer prevention, cancer care, and other cancer-related issues. In 2017, ASCO launched the nation’s first annual National Cancer Opinion Survey.
The results can be reassuring, such as the 2019 survey’s finding that 84% of Americans believe using tobacco products can cause cancer. But often results reveal areas and issues of concern. For instance, another finding from last year’s survey raises concerns about the lack of action among a large majority of Americans in reducing their risk for cancer.
“Our survey helps us better understand Americans’ views on a range of cancer-related issues and exposes areas that are important to address,” said 2019-2020 ASCO president Howard A. “Skip” Burris III, MD, FACP, FASCO. “This year’s findings raise concerns about the current state of cancer prevention in America, and strongly support the need for more education on the topic, beginning at a young age.”
ASCO’s third annual national survey was conducted online by The Harris Poll between July 9 and August 10, 2019. The respondents included 4,001 U.S. adults ages 18 and older and an oversample of 814 adults ages 18 and older with cancer, for a total of 1,009 adults who have or had cancer.
Troubling misperceptions about e-cigarettes among young adults
Roughly one in five young adults uses e-cigarettes daily or recreationally, and nearly one in four believes the products are harmless and not addictive. This is despite warnings from the U.S. Surgeon General that e-cigarettes (also known as vapes) contain addictive and harmful or potentially harmful ingredients, including nicotine, lead and other heavy metals, and flavorants such as diacetyl, a chemical linked to serious lung disease.
The ASCO survey found other misperceptions among young adults regarding e-cigarettes. Among Generation Z (ages 18 to 22) and Millennials (ages 23 to 38), the survey found that 20% of Generation Z and 24% of Millennials believe e-cigarettes are harmless and 22% of Generation Z and 24% of Millennials believe you cannot get addicted to e-cigarettes. In addition, 27% of Generation Z and 29% of Millennials think flavored e-cigarettes are less damaging to your health than non-flavored e-cigarettes.
“The tobacco industry’s targeting of our youth with flavored products that mask the addictive nature and potential harms of e-cigarettes continues to be a troubling trend that must be aggressively addressed,” said Lisa Lacasse, president of the American Cancer Society Cancer Action Network. “Nearly all e-cigarettes contain nicotine, which is highly addictive and has significant health risks for adolescents. The fact that so many of our youth are unaware of these dangers unfortunately speaks to the pervasive marketing practices of the profit-driven tobacco industry. More importantly, it speaks to the fact that comprehensive oversight and regulation of the e-cigarette industry is long overdue.”
Although the survey revealed misperceptions about e-cigarettes, the findings indicate that a majority of Americans support regulation at the federal level. While the survey was completed before the first death from vaping had been reported, already 71% of Americans believed the U.S. Food and Drug Administration (FDA) should regulate e-cigarettes and 68% supported raising the legal age for purchasing e-cigarettes from 18 to 21. To put the latter finding into perspective, 69% supported raising the legal age for purchasing tobacco products from 18 to 21.
“There are so many unanswered questions about e-cigarettes,” said ASCO chief medical officer Richard L. Schilsky, MD, FACP, FSCT, FASCO. “We need more research about these products so we can begin to answer these questions and protect the health and safety of the American public through education and, where necessary, regulation.”
In 2015, ASCO and the American Association for Cancer Research issued a joint policy statement calling for a number of steps to be taken in the interest of public health. The recommendations included requiring e-cigarette packaging to carry safety labels with a warning about nicotine addiction, prohibiting youth-oriented advertising, and banning the sale of e-cigarettes containing candy or youth-oriented flavors unless there is evidence demonstrating these products do not encourage use of e-cigarettes by youth.
Few Americans are incorporating cancer prevention into daily life, despite concerns about developing the disease
The survey found that nearly six in 10 adults (57%) report being concerned about developing cancer in their lifetimes, but only one in four (24%) say they care deeply about cancer prevention and incorporate risk reduction strategies into their daily lives. An even more concerning statistic is that 25% of Americans believe that there is nothing they can do to prevent cancer.
According to the World Health Organization, 30% to 50% of cancers are preventable because they are linked to modifiable risk factors. However, ASCO’s survey found that less than a quarter of adults report talking to a doctor about their cancer risk (22%) or what they should do to reduce their cancer risk (18%). In fact, more Americans get information about cancer prevention online than from their doctor, with 24% saying they have searched the web for information about how to reduce their cancer risk.
“We also found low levels of public awareness of known cancer risk factors such as alcohol and obesity, and misconceptions that artificial sweeteners and cell phones cause cancer in humans,” said ASCO CEO Clifford A. Hudis, MD, FACP, FASCO. “Clearly, this is a larger public health issue and more work needs to be done. For starters, we urge every American to have regular conversations with their physician about reducing their risk of cancer.”
By and large, Americans are uncertain where to find trusted information about the causes of cancer and how to reduce their risk
Based on the survey findings, Americans who want to reduce their risk for cancer may not know where to begin looking for information on how to do so. Eight in 10 Americans (81%) believe there is a lot of information available about what causes cancer, but most have difficulty discerning what is credible. Two-thirds (66%) say they are unsure which sources to trust for information about what causes cancer, and a similar proportion say it is hard to know the most important things to do to reduce their risk of getting cancer (64%).
The first step is to discuss cancer prevention with a physician on a regular basis, said Dr. Burris. “If people want to supplement these conversations with online resources, they should look for sources that have been approved by doctors, such as ASCO’s patient information website, Cancer.Net.”
Cancer.Net has been providing trusted cancer information for people living with cancer and their caregivers for nearly 20 years. The website is certified by Health On the Net Foundation, a nonprofit organization with consultative status with the United Nations, that promotes transparent and reliable health information online. Cancer.Net has received several honors for its content, design,
and ease of use.
“What I love about Cancer.Net is that it’s just so well thought out,” said Sherri Stahl, a cancer survivor and patient advocate. “It covers all aspects of cancer. And even now, today, [I] just go back and revisit it and remember questions to ask the doctor, ongoing concerns. It’s a fabulous, fabulous resource.”
More than 150 medical, surgical, radiation, and pediatric oncologists, physician assistants, oncology nurses, social workers, and patient advocates review and vet the content through an established peer-review process. Cancer.Net provides helpful, easily accessible information on more than 120 types of the disease, including specific information on treatments and side effects.
Cancer.Net has content available in Spanish and has an international reach. In 2019, approximately 65% of the site’s visits came from outside the United States.
“With Cancer.Net, we bring the voice of the physician to people living with cancer and meet them where they are,” said the site’s editor in chief Lidia Schapira, MD, FASCO. “We offer the site in a mobile version and app format, and conduct usability testing that includes walking through scenarios with patients and caregivers to ensure they can easily find the information they need.”
Most people affected by cancer aren’t discussing end-of-life care with their doctors, even though they believe it’s important
More than nine in 10 Americans (91%) believe it is important for doctors and patients to take the time to discuss end-of-life care. However, few Americans affected by cancer say they or their loved one have ever discussed end-of-life care with a doctor—only 26% of people who have or had cancer have discussed end-of-life care with their physicians, and among caregivers, only 35% have had those conversations with the doctor.
“This survey reminds us that most people want to discuss their goals and care plans with their doctors as their illness worsens and focus treatment on what matters most to them,” said Joe Rotella, MD, MBA, HMDC, FAAHPM, chief medical officer of the American Academy of Hospice and Palliative Medicine. “Most doctors would agree, but this often doesn’t happen. The survey shows that these conversations take less than a half-hour, so time shouldn’t be a barrier. It may feel uncomfortable for a patient, family member, doctor, or other health professional to bring up the topic of ‘what if things get worse?’, but the discussion can empower patients and caregivers, and guide the health care team to provide the right care at the right time for each individual.”
The hesitation to initiate end-of-life discussions is not just limited to patients and physicians. Most Americans are not discussing their wishes with anyone. The results found that only 53% of Americans have thought about end-of-life care, but one in four of those respondents say they have never communicated their wishes to anyone, including family members.
“It’s critical to plan ahead for end-of-life care in the advanced stages of cancer or any disease,” said Dr. Schilsky. “Physicians and patients should discuss all of the available care options and develop a plan that reflects patients’ wishes and goals. This can ease the emotional stress and may even reduce the financial burden for patients and their loved ones.”
ASCO’s Cancer.Net provides resources for planning for end-of-life care, including a patient booklet to help guide discussions with physicians. This booklet may also be helpful for physicians conducting these discussions.
Tracking Americans’ Views on Cancer
The National Cancer Opinion Survey was established in collaboration with The Harris Poll and is supported by the Mission Endowment of Conquer Cancer, the ASCO Foundation.
“As the world’s leading organization of oncology professionals who care for people with cancer, ASCO believes it is critical to understand what the public, including patients, think of, expect, and need from the nation’s cancer care system,” said Dr. Hudis. “The results of this survey will inform our activities as we work to conquer cancer through research, education, and the promotion of the highest quality patient care.”
Previous National Cancer Opinion Surveys have allowed ASCO to learn more about Americans’ views on cancer and track them over time.
The 2017 survey found that fewer than one in three Americans (30%) recognized alcohol as a risk factor for cancer and that only 38% of Americans said they were limiting their alcohol intake as a way to reduce their risk for cancer. In the same year, ASCO released a policy statement identifying alcohol as a definite risk factor for cancer. The statement cited that between 5% to 6% of new cancers and cancer deaths globally were directly attributable to alcohol. This year’s survey found that 31% know alcohol is a risk factor and that 40% of Americans say they are limiting their alcohol consumption.
The most alarming finding from the 2018 survey was that nearly four in 10 Americans (39%) believed cancer can be cured solely through alternative therapies such as enzyme and oxygen therapy, diet, vitamins, and minerals. This was in spite of a 2018 Journal of the National Cancer Institute study finding that patients with common cancers who chose to treat them using only alternative medicine had a mortality rate 2.5 times higher than patients who received standard cancer treatments such as surgery, radiation, chemotherapy, immunotherapy, and hormone-based therapies. The 2019 ASCO survey found that 34% of Americans still hold that view.
The survey also monitors American’s optimism about the future of cancer treatment and pace of progress over the coming decades. In 2017, nearly four in five Americans (79%) said they were optimistic that the majority of cancers will be curable within the next 50 years, compared to 66% who thought most cancers will be curable within the next 25 years, and 39% who believe most cancers will be curable within the next 10 years. Those numbers actually dropped in the 2019 survey, with 76% saying the majority would be curable in the next 50 years, 61% believing they would be curable in 25, and 32% thinking this would happen in the next decade.
“Each year the National Cancer Opinion Survey aims to uncover not only what people know about cancer, but also what they don’t know. The results from this year’s survey again revealed misconceptions—and some dangerous ones—underscoring the critical need for organizations like ASCO to continue to educate the public about cancer and how to reduce their cancer risk,” said Robyn Bell Dickson, managing director of Research for Public Release at The Harris Poll.
ASCO and The Harris Poll are currently developing the questionnaire for the 2020 survey. The annual poll will be conducted over the summer, with the results being released in the fall.
View the full set of findings from ASCO’s National Cancer Opinion Survey.
Where Can Your Patients Learn More?
As ASCO’s patient information website, Cancer.Net brings the expertise and resources of ASCO to people living with cancer and those who care for them. Cancer.Net offers patient resources related to the 2019 National Cancer Opinion Survey results.
Information on e-cigarettes:
- Health Risks of E-cigarettes, Smokeless Tobacco, and Waterpipes
- How to Quit Smoking and Using Tobacco Products
- Stopping Tobacco Use After a Cancer Diagnosis
Information on cancer prevention:
Finding trusted sources of cancer information:
- Evaluating Cancer Information on the Internet
- Understanding Cancer Research Study Design and How to Evaluate Results
- Don’t Be Fooled: How to Protect Yourself From Cancer Treatment Fraud
Information on end-of-life care:
For even more of the latest information on cancer care and research, visit the Cancer.Net Blog.