Frustration from patients at lack of information in Alzheimer’s risk biomarker results

Written by Francis Davies

As researchers in Alzheimer’s turn their focus away from treating the disease after diagnosis and begin to look at preventative measures, a study at the Perelman School of Medicine at the University of Pennsylvania (PA, USA) has examined responses from seniors when given brain scan results detailing amyloid levels.
Developing a preventative therapy is challenging for a number of reasons; however, it will require the identifying and informing individuals with high Alzheimer’s risk in order to test potential new therapies.

The study examined cognitively normal seniors of 65 years and older who had been accepted into a large Alzheimer’s prevention trial based on brain scans displaying an ‘elevated’ level of beta-amyloid protein plaques.  The team, led by Jason Karlawish (University of Pennsylvania), interviewed 50 seniors (ages 65–85) enrolled in the NIH-sponsored A4 trial, and examined their responses to the information that they had elevated brain amyloid.

Interviewees with a family history of Alzheimer’s, or who had experienced recent memory problems, a group accounting for roughly half the total, reported that they had expected the scan results. The majority understood that elevated brain amyloid levels corresponded to an increased risk of developing Alzheimer’s dementia. A smaller number believed that they had either a total risk of dementia, including ‘early Alzheimer’s’, or no increased risk whatsoever.

Researchers concluded that simply being told that their amyloid plaque level was ‘elevated’ frustrated the patients, who felt that they could have benefitted from more expansive and detailed information. Specifically, 20 of the 50 subjects were dissatisfied with the ambiguity of the message that their brain amyloid level was ‘elevated’, with the lack of specificity leaving them with questions about the level of severity implied. A 75-year-old participant stated: “my background is in a technical area, and I’m used to having facts and data.”

The results suggest that clinicians returning results should endeavor to explain what the term ‘elevated’ means in relation to dementia risks, as well as how the term is measured and why it is applied. Currently, disclosing amyloid PET results to cognitively normal adults only occurs in experimental contexts.

Sources: Mozersky J, Sankar P, Harkins K, Hachey S, Karlawish J. Comprehension of an Elevated Amyloid Positron Emission Tomography Biomarker Result by Cognitively Normal Older Adults. JAMA Neurol. doi:10.1001/jamaneurol.2017.2954 (2017) (Epub ahead of print);