This story serves readers by acknowledging the news about revised definitions for Alzheimer’s disease diagnosis can be confusing… and for highlighting the potential to sow worry about “preclinical Alzheimer’s”.
A shortcoming of this story (also shared by the AP version) is the failure to tell readers about the ties between experts on the guideline panel and companies that are developing tests and treatments for Alzheimer’s. The story would have been better if it had also quoted experts independent of the panel.
Alzheimer’s is a terrible disease. Patients and families are desperate for hope of progress, so stories about tests or treatments should follow the model of this story by giving readers a sober and realistic assessment of developments.
The story clearly points out that brain scans and biomarker tests are “are to be used only for research, and not for diagnosing Alzheimer’s in the general public.” Since there are no recommended changes that directly affect readers today, and since it is not known which diagnostic tests may eventually prove useful, it is reasonable to put off discussions of cost.
As mentioned in the section on harms, this story tells readers that it is too soon to use lab tests or brain scans to diagnose Alzheimer’s disease in routine clinical practice, so it is reasonable to defer consideration of potential benefits. This story is appropriately cautious about what benefits early diagnosis might offer, pointing out that receiving a diagnosis when there is no known treatment can cause worry and concern without offering an effective response..
As the story makes clear, lab tests and brain scans looking for signs of Alzheimer’s are not ready for clinical use, so it is reasonable to defer discussion of the potential harms of such tests. The story does mention that the revised guidelines do “leave one wondering if a lot more worry will be generated by the notion of “preclinical Alzheimer’s,” when science and medicine can’t offer anything to ease those fears.”
The story clearly points out that brains scans and lab tests for Alzheimer’s disease have yet to demonstrate their accuracy and reliability, and so are useful for research only. It also reminds readers that since there are no treatments that can slow or stop Alzheimer’s, early diagnosis has limited value.
The story reports that about 5 millions Americans have Alzheimer’s disease. It doesn’t exaggerate to whom this news is relevant.
Although the overall tone of this story is cautious and balanced, only one expert is quoted. Readers don’t get any sense of how widely accepted the panels conclusions are or what dissenting opinions other experts might hold.
More importantly, this story does not tell readers about the links between panel members and companies that are developing tests or treatments for Alzheimer’s disease. The journal article announcing the new guidelines includes this note about the expert quoted in this story: “David Knopman serves on a Data Safety Monitoring Board for Lilly Pharmaceuticals, is an investigator for clinical trials sponsored by Elan Pharmaceuticals, Forest Pharmaceuticals, and Baxter Healthcare, is deputy editor of Neurology, and receives compensation for editorial activities”.
This story gives readers a sense that putting off evaluation for signs of early Alzheimer’s disease is a reasonable alternative, since not only are lab tests and brain scans not ready for regular clinical use, but there is limited value in getting a diagnosis since there are no treatments that can change the course of the disease.
Right from the start this story makes clear that the revised definition of Alzheimer’s disease “won’t change how the vast majority of people are diagnosed. It also doesn’t change the very limited treatment choices.”
The story summarizes key components of the new definitions of the stages of Alzheimer’s disease that are different from those used in the 1984 guidelines. It points out that lab tests and brain scans have not been shown to be accurate and reliable in ways that would make them useful in clinical settings, as well as some of the questions that remain about how the results would be used. A more complete description of which biomarkers are being studied would have been a good addition.
This story does not appear to rely 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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