This is one of two stories we reviewed that cover results of a phase 1 trial to study the use of a modified poliovirus to fight glioblastoma, a fatal brain cancer. The results of the study were published in the New England Journal of Medicine. The story delves into the harms of the treatment and refrains from disease-mongering.
Yet the definitive cause-and-effect framing of the lead and the headline, along with a single non-representative patient anecdote, might lead readers to believe the evidence is stronger than it is. The story also lacked independent sources and a mention of other similar research. We also reviewed a story by NPR, which had similar shortcomings.
Stories about experimental treatments for fatal conditions such as glioblastoma should shy away from cause-and-effect framing and overly positive anecdotes in order to avoid raising false hopes.
You can hear a podcast that describes the emotional pain that premature hype around a glioblastoma treatment inflicted on one patient and his family.
There’s no mention of how much this might cost, but we’ll rate this N/A since the story makes it clear that this concept still requires more research.
The story did give numbers, reporting that “21% or so of patients helped by the vaccine all survived at least three years,” while 4% of patients in the the historic control group were alive after three years. But in a small study, why not give readers the absolute numbers: how many out of how many? Why make them do the math in their heads?
Some of data were incomplete. For example, the story said of the 61 treated, “eight patients had no evidence of the tumors growing any more and two had no evidence of a brain tumor at all,” without indicating how much time had passed since those patients were diagnosed and treated.
Better than the NPR story that we also reviewed, NBC did a good job of spelling out harms, stating 19% of patients had “notable adverse events” and more than a quarter experienced brain damage affecting speech and communication. Again, though, we think it’s better to give readers the absolute number of adverse events – how many out of how many?
The story did some things right on this score, but we wish it had refrained from cause-and-effect language and the inclusion of a single — extremely positive — patient anecdote.
To its credit, the story stated in the second graph that this is “no miracle cure.”
However, we take issue issue with the lead’s definitive tone, which stated that the treatment “helped some patients live for years longer.” That assertion was echoed in the headline. The journal manuscript did not use such language, but referred only to the survival rate being higher than the rate among historical controls.” As the American Cancer Society states, “(Phase I) studies are not designed to find out if the new treatment works against cancer.” Their primary focus is on whether the approach is safe. So the “helped some live for years longer” language is misleading. More trials with randomized controls are needed to determine whether this treatment actually led to better outcomes.
The story quoted a 20-year-old patient who said she was “amazed” at her improvement after taking the treatment. However, the story didn’t alert readers that she was one of just two of the 61 to have survived six or more years.
Lastly, the story should have described limitations of using a sample of past patients as a control group — a practice that might generate more favorable findings than a randomized control trial.
The story didn’t exaggerate the prevalence of this disease.
The story has no independent sources, and does not mention that seven study authors have a financial tie with a firm that holds the patent.
The story mentioned standard treatment for glioblastoma can include surgery, chemotherapy, and radiation.
However, the story would have been stronger if had mentioned that there are other experimental viral treatments under study for glioblastoma.
The story makes it clear that this is an experimental treatment and is not widely available.
The story made it sound like this was a new concept, but this research has been dancing in and out of the sensational spotlight for years.
This story does not rely on a Duke news release although it does mimic the news release’s cause-and-effect framing.
Systematic, Criteria-Driven
Monday at #ADA2021, an infectious disease epidemiologist, a journalist, and a researcher shared perspectives on communication of risk in the era of COVID-19: http://ow.ly/ROfR30rMeE7 @AstleyCM @garyschwitzer @berthahidalgo @ADA_DiabetesPro
Shoutouts to @susan_bewley @drkevinknopf @MichaelBaum11 in this call for more than fawning coverage from press releases for these kinds of stories.
Also, linked history inside goes back 5 years just on Grail apparently trying to become Holy Grail. https://twitter.com/garyschwitzer/status/1408849696416841731
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