Research Participants' Perspectives on Precision Diagnostics for Alzheimer's Disease

Area of Science:

• Neurology
• Genetics
• Medical Imaging

Background:

• Understanding patient responses to Alzheimer's disease (AD) risk information is crucial for implementing precision diagnostics.
• Advances in disease-modifying therapies necessitate clear communication of AD risk.
• Participant comprehension and psychological impact of AD risk disclosure are key considerations.

Purpose of the Study:

• To assess participants' understanding of amyloid positron emission tomography (PET) imaging results for AD risk.
• To evaluate participants' self-efficacy, psychological impact, and experiences with result disclosure.
• To gauge interest in genetic testing for AD risk.

Main Methods:

• Survey administered to 88 individuals undergoing clinical evaluation for AD and receiving PET imaging.
• Analysis of close-ended survey items using Fisher's exact test.
• Qualitative coding of open-ended responses to understand participant perspectives.

Main Results:

• Most participants reported subjective understanding of their PET results and felt empowered for future planning.
• Participants with negative PET results experienced relief and happiness more frequently than those with positive results.
• High interest was noted for genetic testing to inform medical decisions and family risk assessment.

Conclusions:

• Participants demonstrated high subjective understanding and self-efficacy regarding their PET results.
• Learning PET results did not lead to significant negative psychological effects.
• There is substantial interest in genetic testing for AD risk assessment and planning.