This story is a good example of what an independent expert’s perspective can bring to a piece.
Stories about predictive tests for Alzheimer’s Disease may play with the emotions of affected families. This story appropriately evaluated evidence, so that the current state of this research – what it might mean and what it does not yet mean – was crystal clear.
No discussion of costs. Yes, we know that it’s too early to use this in clinical settings, but the story makes the case that this builds on research following patients for as long as 12 years. Any predictive test would hold appeal for many people – so cost ramifications are important to discuss even at this early stage. Both tests are available at the present time so that with a little bit of digging, the costs could have been provided.
We’ll give the story a satisfactory grade for providing context for the projected benefits of the test:
“A new study suggests that biomarkers found in cerebrospinal fluid (fluid that surrounds the spinal cord and brain and acts as a protective cushion) could predict who would develop Alzheimer’s disease 90% of the time among patients with mild cognitive impairment, a condition characterized by measurable memory problems.
…
Knowing which patient with mild cognitive impairment patients may go on to develop Alzheimer’s is vital information for researchers, who are looking for treatments for the fatal brain disease. The current thinking is that interventions will be most effective when given to a patient as early as possible.”
But the story is quick to note that it’s too early to use this as a diagnostic tool in clinical settings.
The story did make several stabs at touching on harms, reporting:
“Some of the participants, who were originally found to be stable with mild cognitive impairment after about five years, went on to develop Alzheimer’s disease during the longer follow-up. That suggests that a five-year follow-up period is not long enough to determine how well biomarkers can predict which patients will develop Alzheimer’s disease, researchers say.”
And it did end with this:
“As scientists gain more insight into predicting Alzheimer’s, aging adults may struggle with the question of whether they want to know their risk, especially since there’s still no cure. Some people want to enroll in clinical trials as soon as they start showing symptoms; others would rather be ignorant of their status since there is no cure.”
We think these could have been framed more clearly as potential harms, but we’ll give the story the benefit of the doubt on this one.
The story did an adequate job explaining what the study found, what it might mean, but what it does not yet mean.
There was no disease-mongering in the story. In fact, it explained that “not everyone with this condition is a good candidate for an Alzheimer’s trial.”
One independent expert’s comments added needed perspective to the findings.
That independent expert added this important reminder:
“What I tell people is: If they’re worried about their thinking abilities, that they should make an appointment with a neuropsychology or a neurologist to get an evaluation,” Brinkman says. “The way we diagnose Alzheimer’s disease is by evaluating the behavior and the risk factor medical profile, not by looking at biological markers at this point.”
Again, the independent expert’s perspective was important:
“When these sorts of studies get published, Brickman and other doctors get phone calls from aging adults wondering whether they should be getting spinal taps to assess their risk. But it’s too early to use this as a diagnostic tool in clinical settings, says Brickman. Down the road, the “fantasy” is that asymptomatic people will be able to get a biomarker test to determine whether they’ll one day get Alzheimer’s, but that’s not possible right now, he adds.”
The story was clear that:
It’s clear that the story did not rely solely or largely 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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