Language minimizing adverse events in abstracts ‘harmful,’ can affect patient care
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Use of subjective minimizing terminology, such as “safe” and “tolerable,” when discussing treatment-related toxicities occurs frequently at oncology and hematology conferences, according to a study published in Journal of Cancer Policy.
More than 15% of published abstracts from ASCO, ASH and European Society for Medical Oncology annual meetings used subjective minimizing language from 2019-2021, and nearly 9% of those included grade 5 adverse events.
“It becomes a culture that is harmful,” Samer Al Hadidi, MD, MS, FACP, assistant professor and hematologist/oncologist at Winthrop P. Rockefeller Cancer Institute at University of Arkansas for Medical Sciences, told Healio. “We call too many things ‘safe’ when sometimes it’s not safe ... and that may reflect into the discussions with patients.”
Subjective minimizing language subverts data and can “sugar coat” toxicities, not taking into account a patient’s personal feelings, Al Hadidi said.
“For example, a blood transfusion that is a requirement for a certain side effect grade may be OK for me as a physician, but for a patient maybe this is a big deal,” he said.
Terminology transfer
Researchers reviewed the electronic databases of all three major conferences to investigate the prevalence of minimizing terminology. They searched for five keywords or phrases — “safe,” “well-tolerated,” “tolerable,” “no new safety signal,” and “no new safety concern” — in prospective cohort studies and clinical trials.
They examined 34,975 documents, and 15.2% contained subjective minimizing language. Phase 1 trials made up most of that group (45.5%), followed by phase 2 studies (29.6%).
Of the abstracts that had minimizing terminology, 43.7% had one word or phrase, and 40.1% had two.
Additionally, 78% had grade 3 and 4 adverse events listed, 8.8% had grade 5 (death related to treatment) and 18.1% did not report any data on toxicities.
“They were higher than what we expected, specifically when we come to grade 5 or discontinuation related to the adverse events, which are major things,” Al Hadidi said. “You’re saying that those patients did not tolerate this drug,” he added. “They stopped it because of side effects, and we’re still calling them ‘safe.’”
The terminology does not stay within the conference either. It transfers to press releases, which media outlets pick up. Patients read about them or search abstracts themselves while looking for information on a treatment, and those words influence their decisions instead of the numbers.
Even clinicians, maybe those short on time, can latch onto the terminology instead of fully investigating the data themselves.
“Our job as physicians is to [enable] informed consent with the appropriate information, and such decisions should be based on that,” Al Hadidi said.
Data allows clinicians to effectively communicate with patients and help guide treatment.
“Let’s say that this intervention results in diarrhea in one out of three patients,” Al Hadidi said. “For some patients that’s a big problem — for some others it’s nothing that they worry about. I’ll tell them that usually this diarrhea is not bad [enough] for you to be coming here to get fluids or require admission. That likely means it’s not as severe, but, more importantly, I’ll tell them ... what is the side effect, how frequently it happens and what to expect.”
Relying on data
Al Hadidi believes the solution is simple. Abstracts should rely on data to convey adverse events and nothing more. Also, conferences should require abstracts be changed if they have subjective minimizing terminology.
“We can simply fix it using all the technology we have nowadays,” he said. “Whenever you try to put any of those in your abstract body, you will not be able to submit it because you put this word in, and you need to avoid such wording. If I review an abstract for one of my trainees or colleagues or a group of people and I see some of those words are there, I’ll edit it and let them know we need to remove that.”
Al Hadidi hopes to do a follow-up examination to determine whether progress has been made.
“We just need to provide the numbers the way they are,” he said. “Let the reader actually govern the safety profile.”
For more information:
Samer Al Hadidi, MD, MS, FACP, can be reached at salhadidi@uams.edu.
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