Booklets, Videos Fail to Increase Understanding of Noncurative Intent

Patients Cling to Hope

M. Alexander Otto

July 16, 2020

Educational videos and booklets that provided detailed information on outcomes and prognosis for patients who underwent palliative chemotherapy were no better than usual care at helping the patients understand that treatment was very unlikely to cure their cancer, say researchers reporting a randomized clinical trial. The study compared the two approaches in 186 adults starting second-line palliative treatment for advanced colorectal or pancreatic cancer at five US cancer centers.

Patients were asked, "How likely do you think that chemotherapy is to cure your cancer?" The primary outcome of the trial was the percentage of people who responded, "Not at all likely."

Within 3 months of being given the materials, which were specific to the regimen they were receiving, a little more than half of each group gave that answer ― 52.6% in the intervention arm, vs 55.5% in the usual-care group (P = .72).

The study was published online on July 16 in JAMA Oncology.

A potential problem with the study is that patients were not incentivized to read the booklets and watch the videos, and no one in the clinic helped patients work through them. In the end, 78% in the intervention arm said they had read the booklets, and 40% said they had watched the videos within 2 weeks of receiving them. In the usual-care group, 59% reported that they had reviewed their educational handouts.

"Intervention uptake...was low in the absence of incentives or structured processes to encourage viewing. Although this pragmatic approach mirrors routine practice, alternative strategies (eg, integration with nurse-led teaching) or delivering the intervention later in the disease trajectory might have been more effective," say investigators led by Andrea Enzinger, MD, a gastrointestinal and palliative care oncologist at the Dana-Farber Cancer Institute, Boston, Massachusetts.

It is also possible, they write, that instead of misunderstanding treatment, patients were simply staying positive and hanging onto hope.

Burdensome End-of-Life Care

"We were of course hopeful that such a simple and intuitive intervention would improve patients' understanding of curability; however, given the failure" of previous trials with similar interventions, "we were not surprised," Enzinger said in an interview.

"I think one of the primary problems was that patients were often just too overwhelmed to be able to sit down and attend to a 20-minute video, even though we tried to make them as engaging and patient-oriented as possible," she said. Also, "having a research assistant just recommend the intervention is not nearly as good as [having] a nurse recommend it, then follow[ing] up with specific teaching," she said. She noted that there was no funding for teaching by nurses in the study.

The goal of the work was to address a known problem in oncology: patients often don't understand that there is only a very remote chance of cure with palliative chemotherapy (PC). Discussion about response rates, prognosis, the purpose of treatment, life expectancy, and other topics are often omitted from the consent process. When they are discussed, "it's often in relatively vague terms, for example, that 'chemotherapy might buy you some more time,' rather than giving specific estimates or ranges of estimates," Enzinger said.

"Resources available to support informed consent (ie, consent documents and chemotherapy educational materials) do little to fill these gaps," the investigators write in their report. The resulting "misconceptions undermine the validity of informed consent and have been linked to burdensome end-of-life care."

No Increase in Anxiety

The patients were given five regimen-specific booklets with five companion videos. The materials described infusion logistics; potential benefits and response rates; adverse effects; alternatives; prognosis; and other matters. The materials "were direct about the noncurative potential of PC," the investigators say.

The videos were 22 to 29 minutes long, were narrated by oncologists, and included several patients who described their own experience on the regimen. The videos could be viewed either in the clinic or at home.

Patients were surveyed within a month of receiving the materials and again in 3 months.

Results at the first assessment were similar to those at the 3-month mark, with 49.1% in the intervention arm responding that PC was "not at all likely" to cure their cancer, vs 52.9% in the usual-care group (P = .64).

Overall, most patients wanted "a lot" of information or "as much information as possible" about adverse effects (80.1%), the likelihood of cure (79.6%), and prognosis (79.6%). Booklet/video participants were more likely to have an accurate understanding of adverse effects, such as nausea/vomiting, diarrhea, neuropathy, and hair loss (56% vs 40.2%; P = .05), but this did not meet the study's threshold for statistical significance (P < .05).

"Despite explicit prognostic information," patients in the intervention arm were no more likely to be distressed by their materials than the usual-care group. Satisfaction was similar in both arms, as reflected by scores of almost 8 points on a 10-point scale.

The mean age of the participants was 59.3 years, 58% of the patients were men, 63.4% had metastatic colorectal cancer, and 36.6% had locally advanced or metastatic pancreatic cancer. Most of the participants were White and were highly educated, the authors note.

The next step is to shorten the booklets and videos to make them more user friendly and to integrate them into nurse-led chemotherapy teaching sessions to see whether this makes a difference, Enzinger said.

"Believers in Chemo"

When approached for comment, Peep Stalmeier, PhD, a senior researcher at the Radboud University Medical Center in Nijmegen, the Netherlands, said he doubted nurse-guided teaching would help.

Stalmeier was the senior investigator on a similar trial that had similar results. "These patients are with their back against the wall. They have taken chemotherapy previously, decided to continue several lines of chemo, and are no longer interested in further information." They say they want "to know a lot, but factual knowledge does not improve," he commented.

"I believe that if [the study] sample contained patients doubting chemo, that might have improved the efficacy [of the educational materials]," he said.

Regarding his own work, he said, "I have decided not to do decision support with advanced patients anymore. It is too hard to change the believers in chemo."

The study was funded by the National Cancer Institute and other organizations. Enzinger and Stalmeier have disclosed no relevant financial relationships.

JAMA Oncol. Published online July 16, 2020. Abstract

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