Jan 08, 2019
Overview: The National Cancer Opinion Survey
The National Cancer Opinion Survey was established by ASCO, in collaboration with The Harris Poll, to track the U.S. public’s views on cancer research and care. 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. The poll, supported by the Mission Endowment of ASCO’s Conquer Cancer Foundation, is designed to be conducted annually to measure shifts in the public’s perceptions of a range of cancer-related issues over time.This survey was conducted online in the United States by The Harris Poll on behalf of ASCO between July 10 and August 10, 2018, among 4,038 U.S. adults ages 18 and older, including 152 people who have or had cancer. An oversample of 849 adults with cancer was added to have a large enough sample size to draw conclusions about the population of people with cancer, bringing the total number of adults with cancer surveyed to 1,001. Figures for age, sex, race/ethnicity, education, region, household income, household size, employment status, and marital status were weighted where necessary to bring them into line with their actual proportions in the population. Propensity score weighting was also used to adjust for respondents’ propensity to be online. The adults with cancer were weighted separately, as needed, using population distributions from the Centers for Disease Control and Prevention’s National Health Interview Survey for those diagnosed with cancer, using the same demographic variables as above.
Findings also show caregivers and rural Americans struggle to afford and access cancer care
Nearly four in 10 Americans believe cancer can be cured solely through alternative therapies, according to ASCO’s second annual National Cancer Opinion Survey. This belief persists despite research showing that patients who use alternative therapies instead of standard cancer treatments have much higher mortality rates.
ASCO’s National Cancer Opinion Survey is a large, nationally representative survey conducted online by The Harris Poll. The national survey, commissioned by ASCO and released in November 2018, was conducted online by The Harris Poll from July 10 through August 10, 2018, among 4,887 U.S. adults ages 18 and older. Of the survey participants, 1,001 have or had cancer.
“As the world’s leading organization for oncology care professionals, ASCO believes it is critical to understand what the public—including individuals with cancer—think of, expect, and need from the nation’s cancer care delivery system,” said ASCO CEO Clifford A. Hudis, MD, FACP, FASCO. “This year’s findings will help inform ASCO’s future educational, policy, and advocacy efforts and we need all of our members to help as well. Keeping informed is one critical first step.”
The survey also found that amid the ongoing opioid crisis, nearly three in four Americans are opposed to limiting access to opioids for people with cancer, and many patients with cancer report difficulty obtaining opioid medications. In addition, just as many Americans say they are worried about the financial impact of a cancer diagnosis as about dying of cancer, with caregivers and rural Americans bearing the weight of cancer’s financial and access challenges.
“This survey serves as a barometer of the American people’s views on important cancer-related issues,” said 2018-2019 ASCO President Monica M. Bertagnolli, MD, FACS, FASCO. “It’s revealed a number of critical areas we urgently need to address—from correcting widespread misinformation about cancer treatments, to ensuring patients have access to the pain medication they need, to alleviating the financial distress both patients and their loved ones experience too frequently.”
Many Americans, Including Patients, Believe Cancer Can Be Cured Without Standard Treatments
Nearly four in 10 Americans (39%) believe cancer can be cured solely through alternative therapies such as enzyme and oxygen therapy, diet, vitamins, and minerals. However, according to a recent study published in the Journal of the National Cancer Institute, patients with common cancers who chose to treat them using only alternative medicine had a mortality rate 2.5 times higher than that of patients who received standard cancer treatments such as surgery, radiation, chemotherapy, immunotherapy, and hormone-based therapies.1
Even many of the respondents with direct cancer experience—people who have or had cancer and family caregivers—believe cancer can be cured solely through alternative medicine (22% and 38%, respectively). The survey also found that younger people are the most likely to hold these views: 47% of people ages 18 to 37 and 44% of people ages 38 to 53.
“There’s no question that evidence-based cancer therapy is necessary to effectively treat the disease,” said ASCO Senior Vice President and Chief Medical Officer Richard L. Schilsky, MD, FACP, FSCT, FASCO. “The vast majority of alternative therapies either haven’t been rigorously studied or haven’t been found to benefit patients. When patients are making critical decisions about which cancer treatments to undergo, it is always best to follow the evidence from well-designed research studies.”
Caregivers, Rural Patients Bear Brunt of Cancer’s Financial and Access Challenges
If faced with a cancer diagnosis, 57% of Americans say they would be most concerned about either the financial impact on their families or about paying for treatment, compared to 54%, each, who say they would be most concerned about dying or about cancer-related pain and suffering.
Even more than patients, family caregivers bear the brunt of the high cost of cancer treatment:
- Among caregivers responsible for paying for cancer care, nearly three in four (74%) say they’re concerned about affording it.
- More than six in 10 caregivers (61%) say they or another relative have taken an extreme step to help pay for their loved one’s care, including dipping into savings accounts (35%), working extra hours (23%), taking an early withdrawal from a retirement account or college fund (14%), postponing retirement (14%), taking out a second mortgage or other type of loan (13%), taking on an additional job (13%), or selling family heirlooms (9%).
“Patients are right to be concerned about the financial impact of a cancer diagnosis on their families. It’s clear that high treatment costs are taking a serious toll not only on patients, but also on the people who care for them,” said Dr. Schilsky. “If a family member has been diagnosed with cancer, the sole focus should be helping them get well. Instead, Americans are worrying about affording treatment, and in many cases, they’re making serious personal sacrifices to help pay for their loved ones’ care.”
Americans in rural areas are the most likely to be concerned about the availability of cancer care near where they live:
- Four in 10 rural Americans who have or had cancer (40%) say there aren’t enough doctors specializing in cancer care near their home, compared to 22% of urban and suburban patients.
- Rural patients typically spend 50 minutes traveling one way to see their cancer doctor, versus 30 minutes for non-rural patients.
“The unfortunate reality is that rural Americans routinely have to travel long distances for cancer care, which can lead to dangerous delays in their diagnosis and treatment,” said Dr. Bertagnolli. “As a result, rural counties have higher death rates from many common cancers than urban areas. Our health care system needs to address these disparities so that every patient, no matter where they live, can access high-quality cancer care.”
Americans Support Use of Opioids and Medical Marijuana for Cancer, But Access Is a Challenge
Most Americans believe that patients with cancer should not have their access to opioids curtailed amid efforts to address the opioid epidemic: 73% say any new rules and regulations that make prescription opioids harder to obtain should not apply to patients with cancer.
Yet, the survey shows that accessing opioids for cancer pain is already difficult for many people with cancer. In a small sample, 40% of patients with cancer who have used opioids in the past 12 months to manage pain or other symptoms have had trouble accessing them.
“People with cancer frequently experience severe pain, and many of them require opioids to treat it,” said Dr. Bertagnolli. “Americans seem to recognize that patients’ access to needed pain medication should not be restricted, even as our country grapples with how to tackle the opioid crisis.”
According to the survey, the vast majority of Americans (83%) support the use of medical marijuana by people with cancer. However, 48% of a small sample of patients who have used medical marijuana in the past 12 months say they have had difficulty obtaining it.* In addition, 58% of people who have or had cancer say they wish more information were available about the benefits of medical marijuana for symptom relief.
Americans Demand More Action From Washington on Several Fronts
Regardless of political affiliation, Americans want the U.S. government to take action on health policy in several key areas, including lowering the cost of prescription drugs. For example:
- 88% say Medicare should be allowed to directly negotiate prescription drug prices with drug makers.
- 86% say the government should regulate the price of cancer drugs to help lower their cost.
- 77% say it should be legal for U.S. residents to buy cancer drugs from pharmacies in other countries.
In addition, Americans are calling for greater investment in cancer research, screenings, and care, even if it means higher taxes or adding to the deficit:
- Two in three Americans (67%) say the government should spend more money to develop cancer treatments and cures.
- Over half of Americans (58%) think the government should spend more money to help Americans afford cancer screenings and care.
The overwhelming majority of patients with cancer are happy with the cancer care they have received: nearly 9 in 10 people with cancer believe they are receiving or have received the best possible cancer care (89%) and are satisfied with the quality of the doctors who specialize in cancer care near where they live (88%).
Future Surveys
ASCO will continue to conduct the National Cancer Opinion Survey on an annual basis each summer and will release the results each fall. The results will inform ASCO’s understanding of people’s (including patients and caregivers) perceptions and opinions about all issues impacting cancer care, including prevention, access, quality, and progress through research. These findings will help inform the Society’s educational and policy efforts.
“The survey is scheduled to be conducted again next year, and this will give us another opportunity to drill down deeper into findings from this year and explore other emerging issues while tracking potential changes in the focus and concerns of the general public we serve,” said Dr. Hudis.
Access the full set of 2018 National Cancer Opinion Survey findings.
*Small base (<100). Results are suggestive but not definitive.
A Look Back: 2017 National Cancer Opinion Survey Findings
The first National Cancer Opinion Survey was commissioned by ASCO and scientifically conducted online by The Harris Poll from July 10-18, 2017, among 4,016 U.S. adults ages 18 and older. The data showed that more than a third of Americans report having firsthand experience with cancer: 4% have or had cancer themselves, and 32% have an immediate family member who has or had cancer. The following are key findings from the 2017 survey.
Key Cancer Risk Factors Unrecognized
While a majority of Americans correctly identified tobacco use (78%) and sun exposure (66%) as risk factors for cancer, far fewer were aware of other lifestyle factors that increase their cancer risk. Notably, less than a third of Americans (31%) realize that obesity is a risk factor for cancer, even though it is currently the second leading preventable cause of the disease.
The research also found that less than one in three Americans (30%) recognize alcohol as a risk factor for cancer, despite the fact that alcohol consumption can raise the risk of certain cancers, including cancers of the mouth, liver, and breast. In addition, only 38% said they limit alcohol consumption in order to prevent cancer. Shortly after the survey results were released, ASCO issued a policy statement declaring that alcohol use—whether light, moderate, or heavy—is linked with increasing the risk of several common cancers. The statement also cites between 5% and 6% of new cancers and cancer deaths globally as directly attributable to alcohol.
The 2017 survey found that the majority of Americans are not taking other important preventive actions to reduce their cancer risk. Only 48% said they use sunblock or limit their exposure to the sun and only 41% said they maintain a healthy weight.
In addition, some misperceptions about cancer risk persist: 14% of Americans incorrectly identify cell phones as increasing the risk of cancer, and 8% incorrectly identify caffeine as a risk factor for cancer.
Due to High Costs, Americans Are Skimping on Treatment and Want the Government to Take Action
More than a quarter of Americans (27%) who indicated that either they or an immediate family member has/had cancer said they/their family member have taken specific actions to reduce treatment costs, any of which could have a negative impact on their cancer treatment. Nine percent said they have skipped doctor appointments; 8% said they have refused treatment; 8% said they have postponed filling or not filled prescriptions; 8% said they have skipped doses of prescribed medications; and 7% said they cut pills in half.
The 2017 study also revealed that a large majority of Americans believe the federal government should take action to lower prescription drug costs. For example, 92% of people said Medicare should be allowed to directly negotiate prescription drug prices with drug makers, 86% said the U.S. government should regulate the price of cancer drugs to lower their costs, and 80% said it should be legal for U.S. residents to buy cancer drugs from other countries.
Americans Overwhelmingly Support More Robust Federal Investment in Cancer Research
In 2017, more than nine in 10 Americans (91%) said that they believe that the U.S. government should dedicate substantial funding to diagnose, prevent, and treat cancer. Nearly three in four Americans (73%) said the government should spend more to develop cancer treatments and cures, even if it means higher taxes or adding to the deficit. That’s despite more varied views on other cancer-related priorities: just over half of Americans (54%) said the government should spend more to help Americans afford cancer screenings and care, and just under half (49%) said they believe more money should be spent on cancer prevention.
On the whole, Americans indicated optimism about the future of cancer treatment and expect there to be a steady pace of progress over the coming decades. Nearly four in five (79%) were optimistic that the majority of cancers will be curable within the next 50 years, compared to 66% who think most cancers will be curable within the next 25 years, and 39% who said they believe most cancers will be curable within the next 10 years.
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