December 10, 2018
5 min read

Getting the word out: Effective communication key to ensuring informed choices

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Among the many morning emails recently, one headline caught my attention.

It reported the results of an ASCO survey that suggested about 40% of Americans believe complementary and alternative medicines can cure cancer.

I have very limited experience with patients declining standard therapy in my own practice, but I have seen enough to know how distressing and frustrating it can be to see patients with curable cancers choose a different path for their treatment.

John Sweetenham, MD
John Sweetenham

This is especially true now that there are hard data to show that declining or delaying standard therapy for various cancers is associated with inferior survival. A large study by Johnson and colleagues — which included almost 2 million patients from the National Cancer Database — has clearly shown this.

For whatever reason, a significant fraction of the population is either unaware of the risks associated with the choice of alternative over standard therapy or chooses to take that risk. Either way, our responsibility is to make sure that the word is out there and communicated effectively so everyone can make an informed choice.

Knowledge gaps

Communication and education issues have surfaced several times recently.

We had an excellent talk from an outside speaker who addressed treatment adherence for patients with breast cancer who are receiving adjuvant hormonal therapy.

It turns out that one of the major reasons cited for nonadherence was inadequate explanation by providers of the purpose of and need for this treatment.

In addition, we at Huntsman Cancer Institute are in the process of preparing for our cancer center support grant renewal. This has given us the opportunity to review the activities of our superb Patient and Public Education Department.

Like many other cancer centers, part of our outreach mission is educational. We focus these efforts on education regarding wellness, healthy behaviors, health literacy, and promoting understanding of cancer risk, prevention, screening and treatment.

We coordinate these efforts closely with our communications team to ensure maximum impact. Measuring that impact is challenging, so the results of the ASCO 2018 Cancer Opinions Survey referenced above provide great insight into the public’s understanding of cancer-related issues of many types.

The survey was conducted this past summer. Nearly 5,000 individuals were surveyed, about 20% of whom had a history of cancer. An additional 12% had a family member with cancer and 8% were caregivers for a nonfamily member with cancer.

The survey covered a broad range of subjects, including general understanding of cancer, the role of genetic testing, personal cancer experiences such as access and affordability of care, and understanding of clinical trials.


From the perspective of knowledge and understanding of cancer-related issues, the results were mixed, suggesting that some messages have clearly penetrated the public domain, but that there are still significant gaps in knowledge or reluctance to act on available information.

When asked about causes of cancer, 33% of the population rated lifestyle choices as the primary cause and 23% ranked family history as having more influence. Tobacco, sun exposure and genetics/family history were cited as the top known risk factors for cancer, but obesity and alcohol were not listed in the top five risk factors.

Although younger adults demonstrated greater awareness of the role of alcohol in cancer etiology, they stated they were unlikely to limit alcohol consumption to reduce their risk. Older adults were more likely to do so.

Results of public attitudes toward genetic testing also exposed a significant gap in knowledge and understanding of their utility.

About 9% of those surveyed reported that they have taken a commercially available genetic test to determine their risks for certain types of cancer. Eleven percent of respondents had a test ordered by their physician.

Although 76% of those tested reported that they found the tests provided valuable information about their risks for certain cancer types, only 56% felt that they knew what to do with the results.

Whether the information provided simply wasn’t actionable — in other words, no screening test available or no risk-reduction strategy known — or whether they could not get adequate information from their health care providers is unclear.

Improving communication

As most cancer centers continue to work hard to get the word out about the importance of clinical trials, the survey again uncovers some important gaps in understanding.

Among respondents with a history of cancer, 9% had participated in a clinical trial. Another 11% were eligible but had not participated, 17% thought they were ineligible and the remainder (63%) did not know if they were eligible. For those who were eligible but had not participated, reasons included inadequate information, or concerns that they would receive a placebo or that the trial intervention would be less effective than standard treatment.

A couple other responses to specific questions are illustrative of the ongoing problems with trial accrual.

First, only 26% of those with a history of cancer reported that their doctor had discussed clinical trials. Second, 54% indicated they would have been interested in trial participation if they had known it was an option.

There are, of course, many barriers to trial participation beyond our control, some of which are referenced in this survey. However, possibly the biggest barrier is that most patients simply are not told about trials or are not told enough to make them feel comfortable.


The survey also provides a wealth of other information about attitudes toward quality of cancer care, government funding of cancer research, disparities in care for rural communities, the cost of drugs, and the use of opioids and generic medications.

It makes very interesting reading. One example I found surprising was that, among those who have been affected by cancer, caregivers and family members were less likely than among patients to report a positive attitude toward the care. Caregivers and family members were more likely to believe that there were not enough physicians with adequate expertise in their location.

I could go on, but instead I will suggest that anyone involved in cancer care will find important insights into how the public at large — and those touched by cancer, in particular — understand and respond to many of these issues.

Improving communication on the broader scale, is, of course, a subject of major research focus. Communication of cancer risk, either inherited or otherwise, is one example of a focus of significant research funding, particularly aimed at addressing disparities of many kinds.

The results of this ASCO survey also show that, as individual cancer care providers, our one-on-one interactions are still extremely valuable in informing the decisions our patients — and their families and caregivers — make around issues as diverse as alternative medicines and clinical trial participation.

We all have an opportunity every time we see a patient, their family members and their caregivers in our clinics to help get the word out. We should make the most of it.


ASCO. National Cancer Opinion Survey. Available at: Accessed on Nov. 20, 2018.

Johnson SB, et al. JAMA Oncol. 2018;doi:10.1001/jamaoncol.2018.2487.

For more information:

John Sweetenham, MD, is HemOnc Today’s Chief Medical Editor for Hematology. He also is senior director of clinical affairs and executive medical director at Huntsman Cancer Institute at The University of Utah. He can be reached at

Disclosure: Sweetenham reports no relevant financial disclosures.