What happens when a patient finds out about their Alzheimer’s disease status?

Knowing about a positive amyloid PET result was associated with psychological changes in people with subjective cognitive decline, but those changes did not reach thresholds of clinical concern.

In a prospective study of the AMYPAD Consortium, people who received news of a positive amyloid scan had slightly increased distress, anxiety, or depression scores compared with their peers who learned of a negative scan. reported Dr. Daniele Altomare of the University of Geneva, Switzerland. , co-author JAMA network open.

Altomare and co-authors point out that elevated brain amyloid deposits are thought to be the strongest risk factor for Alzheimer’s disease. Study participants were 105 with subjective cognitive decline, defined as having troubling cognitive problems for at least 5 years, despite assessments that did not indicate cognitive impairment.

“Telling bad news to patients without cognitive impairment can be one of the most difficult tasks physicians have to face in clinical practice,” the authors wrote. “It is therefore important to emphasize that disclosure of positive amyloid PET results was not associated with clinically relevant psychological changes.”

But Jason Karlawish, M.D., Ph.D., of the Penn Memory Center at the University of Pennsylvania in Philadelphia, pointed out that knowledge of elevated amyloid is not benign.

“It was associated with an increase in the event’s impact scale score [IES-R]is a measure of the distress caused by witnessing a traumatic event,” Carlawish observed.

Altomare’s group reported that disclosure-related distress scores were higher in amyloid-positive patients, and median IES-R total scores were higher in amyloid-negative patients, 10 vs 0 (a score of at least 33 was associated with trauma). indicating the possible presence of a post-stress disorder). ). IES-R avoidance score was 0 vs 0, intrusion score was 0.50 vs 0 and hyperarousal score was 0.33 vs 0 (all P.<0.001), respectively.

Among amyloid-positive patients, higher education was significantly associated with reduced disclosure-related distress. The presence of a study partner was also associated with increased disclosure-related distress.

“Alzheimer’s disease affects one brain and at least two hearts: patients and their caregivers,” Karlawish emphasized. He added that learning about the existence of biomarkers for Alzheimer’s disease should start with having enough space and chairs in the lab for at least two people.

“There they should meet with a variety of clinicians, such as social workers, who are skilled at talking about what enriches life,” he wrote. It can lead you to think about who to share the results with and how to plan for the future.”

The AMYPAD study included patients from five European memory clinics recruited between April 2018 and October 2020. Of his 105 participants with subjective cognitive decline, 27 were assessed as amyloid-positive and 78 as amyloid-negative.

The cohort had a median age of 69 years and was 56% male. The median length of education he had was 15 years. No significant differences in sociodemographic or clinical characteristics were found between amyloid-positive and amyloid-negative patients. Study results were assessed at baseline and after disclosure. Some participants collected data over 13 months.

No difference was found in median change in Hospital Anxiety and Depression Scale (HADS) scores from baseline to disclosure between amyloid-positive and amyloid-negative patients.

Major limitations include the lack of long-term follow-up of the study, which “prevents claiming that disclosure of positive amyloid PET does not pose significant long-term psychological risks.” Altomare and co-authors conceded.