This was a story about a new test being developed that may have potential for accurately diagnosing Alzheimer’s disease prior to post mortem examination of the brain. Interesting research. But the story would have benefited from comments from independent experts in the field about the utility of the test reported on – how far along the development is, what impact an early diagnosis could have in terms of treatment and disease progression, and how this test compares to the current methods.
Concern about Alzheimer’s disease is in part due to the nature of this neurodegenerative condition, its progressive nature and lack of good treatment options. Reporting about potentially accurate means of diagnosis is exciting but needs to be tempered with information about its application in real world settings. Being able to diagnosis someone near death is one thing, being able to diagnosis them so that action could be taken to affect the course of the disease or allow them to get their affairs in order – is another.
There was no discussion about the potential costs of this test. This at least could have been estimated. PET scans are extraordinarily expensive.
The story reported that the study found the test was able to correctly assign people into categories of having or not having Alzheimer’s disease in 34 out of 35 cases. It was much less clear about how accurate diagnosis in terminally ill patients (as defined as being in hospice) translates into benefit for these patients. The tests of young people without disease was still not compelling that this test will be able to parse out less severe cases correctly.
The story did mention that it was not yet known if the test could be used to identify cases earlier in the course of the disease.
Although the story did mention that the test involved a radioactive tracer, there was no information about the level of radioactivity exposure involved in the test or whether there were any adverse events reported with the use of this particular dye.
The story did present the nature of the study and included some information about the data from the study. But it didn’t discuss the leap between the way the test was applied in this research setting and the way it would be applied in real clinical use. The story could have emphasized that there is most likely additional work needed before these results will be published and the FDA will review the utility of this test. Only then will their actually be sufficient information to suggest whether the method has utility.
The story did not engage in disease mongering.
The story quotes three clinicians, all of whom had ties to the company involved with promoting the test reported on or the study of that test. So while conflicts of interest were identified, there did not appear to be any independent sources interviewed on the topic. The story mentioned that ‘experts who attended said the data persuaded them that the method works’ but were they all in some way connected with the company?
There was no discussion about other sorts of approaches currently under study for early and accurate identification of Alzheimer’s disease.
The story was clear that it was reporting on a screening test for Alzheimer’s disease that is undergoing study. That said – it would have been better to state explicitly that this test is currently unavailable to patients.
The story discussed the results of a recent study that were just presented at a meeting; in addition, it sounded as though one of the experts questioned about the study was involved in another study funded by the company but it was not clear as to whether it looked at the impact of the same or a different compound/ method. It was not clear from the story whether the results presented are the first examination of this test or not.
Because of the multiple sources quoted, it’s clear this story did not rely solely on a news release.
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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