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. 2024;97(3):1261-1274.
doi: 10.3233/JAD-230609.

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

Hadley Stevens Smith  1   2 , Jill O Robinson  1 , Ariel Levchenko  1 , Stacey Pereira  1 , Belen Pascual  3 , Kathleen Bradbury  3 , Victoria Arbones  3 , Jamie Fong  4 , Joshua M Shulman  4   5   6   7 , Amy L McGuire  1 , Joseph Masdeu  4
Affiliations

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

Hadley Stevens Smith et al. J Alzheimers Dis. 2024.

Abstract

Background: Understanding research participants' responses to learning Alzheimer's disease (AD) risk information is important to inform clinical implementation of precision diagnostics given rapid advances in disease modifying therapies.

Objective: We assessed participants' perspectives on the meaning of their amyloid positron emission tomography (PET) imaging results for their health, self-efficacy to understand their results, psychological impact of learning their results, experience receiving their results from the clinical team, and interest in genetic testing for AD risk.

Methods: We surveyed individuals who were being clinically evaluated for AD and received PET imaging six weeks after the return of results. We analyzed responses to close-ended survey items by PET result using Fisher's exact test and qualitatively coded open-ended responses.

Results: A total of 88 participants completed surveys, most of whom had mild cognitive impairment due to AD (38.6%), AD (28.4%), or were cognitively unimpaired (21.6%). Participants subjectively understood their results (25.3% strongly agreed, 41.8% agreed), which could help them plan (16.5% strongly agreed, 49.4% agreed). Participants with a negative PET result (n = 25) reported feelings of relief (Fisher's exact p < 0.001) and happiness (p < 0.001) more frequently than those with a positive result. Most participants felt that they were treated respectfully and were comfortable voicing concerns during the disclosure process. Genetic testing was anticipated to be useful for medical care decisions (48.2%) and to inform family members about AD risk (42.9%).

Conclusions: Participants had high subjective understanding and self-efficacy around their PET results and did not experience negative psychological effects. Interest in genetic testing was high.

Keywords: Alzheimer’s disease; genetic testing; neuroimaging; surveys and questionnaires.

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Conflict of interest statement

The authors have no conflict of interest to report.

Figures

Fig. 1
Fig. 1
Psychological impact of receiving imaging results related to risk for Alzheimer’s disease and related dementias.
Fig. 2
Fig. 2
Perceived utility of genetic testing for Alzheimer’s disease and related dementias.
See this image and copyright information in PMC

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