This report tells readers the stark reality, that lab tests and brain scans for Alzheimer’s are not ready for clinical use and even when the tests are validated, they will have limited value to patients until effective treatments are developed.
This story includes a comment about how early diagnosis could help patients and families plan for the future; but it would have been nice to see an acknowledgment of the potential psychological and social consequences.
Like the NPR story, this report fails to tell readers about the ties between quoted experts and companies that are developing tests and treatments, even though those ties were disclosed. This story quoted several experts, but none who are independent of the panel that issued the revised diagnosis guidance.
It is more than just validation of the new diagnostic approaches being described that will be needed before these can influence clinical practice. All of the diagnostic test characteristics will need to be examined, including the ability of the test results to accurately predict which patients are likely to develop AD (the false positive, false negative, positive and negative predictive value, etc). Additionally, the reliability of the measures will need to be determined. From a clinical perspective, until there are treatments that can alter progression, other than helping patients understand what to expect in the future, currently there is not a lot of benefit and there are potential harms for knowing early on if a patient has this condition.
The story clearly points out that brain scans and biomarker tests are not ready for clinical use. 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 noted above, the story points out that brain scans and biomarker tests for early signs of Alzheimer’s disease are currently useful to researchers, not doctors in routine clinical practice. The story also reports that, “Current treatments do not alter the course of Alzheimer’s, they just ease symptoms,” thus limiting the benefit of early diagnosis. However, as we mentioned in the section on harms, the story would have been better if it offered more context with the comments of one expert who said that early diagnosis can help patients and families cope with the disease.
Since the story reports that the diagnostic tests for Alzheimer’s are not ready for clinical use and it points out that diagnosis is of limited value now because the available treatments are only able to ease some symptoms in some patients, not treat the underlying disease, we understand why discussion of potential harms is deferred. However, the story does include comments about perceived benefits of early diagnosis for patients and families. It would have been nice to see comments about why people might reasonably choose to defer diagnosis because of the psychological and social effects of being defined as an Alzheimer’s patient when there may be no medical benefit to early diagnosis.
This story is careful to point out the limitations of the brain scans, spinal fluid tests and other diagnostic tools being explored by researchers. It summarizes some of the key challenges that researchers need to address before trying to use scans or lab tests to diagnose patients in routine clinical practice.
The story specifies the estimated size of the patient population: “About 5.4 million Americans and more than 26 million people worldwide have Alzheimer’s, the most common form of dementia.” It does not exaggerate the relevant population.
This story summarizes the point of view of the panel of experts that developed these new guidelines for diagnosing Alzheimer’s disease. However, it does not tell readers whether there are dissenting opinions.
More importantly, the story fails to report relationships between some of the quoted experts and pharmaceutical or testing companies. For example, the disclosure statements with the journal articles announcing the guidelines state that “Marilyn Albert serves as a consultant to Genentech and Eli Lilly and receives grants to her institution from GE Healthcare” and “Guy McKhann serves on a Data Safety Monitoring Board for Merck.” Readers should have been alerted to these industry ties.
The story implicitly recognizes the option of foregoing testing by listing the limitations and uncertainties of not only experimental scans and lab tests, but also the limited utility of clinical diagnosis given the lack of effective treatments for Alzheimer’s disease.
The story alerts readers to not expect immediate changes in how doctors diagnose patients with signs of dementia: “Yet the guidelines do not advise doctors to change how they evaluate and treat patients now. Despite the hoopla about new brain scans and blood and spinal fluid tests that claim to show early signs of Alzheimer’s, they are not ready for prime time and should remain just tools for research, the guidelines say.” The story distinguishes between experimental diagnostic tools and the clinical features of dementia that doctors can use today when trying to determine whether a patient’s symptoms indicate Alzheimer’s or some other neurologic disease or injury.
The story explains to readers key differences between the new guidelines and those released in 1984. It notes that the scans and lab tests that have been developed in recent years are useful to researchers trying to understand Alzheimer’s disease, especially early in the disease process, and the effects of experimental treatments.
The 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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