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

Hadley Stevens Smith, Jill O. Robinson, Ariel Levchenko, Stacey Pereira, Belen Pascual, Kathleen Bradbury, Victoria Arbones, Jamie Fong, Joshua M. Shulman, Amy L. Mcguire, Joseph Masdeu

Research output: Contribution to journalArticlepeer-review

2 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)1261-1274
Number of pages14
JournalJournal of Alzheimer's Disease
Volume97
Issue number3
DOIs
StatePublished - Jan 30 2024

Keywords

  • Alzheimer's disease
  • genetic testing
  • neuroimaging
  • surveys and questionnaires
  • Humans
  • Amyloid beta-Peptides
  • Cognitive Dysfunction
  • Positron-Emission Tomography
  • Amyloid
  • Alzheimer Disease/diagnostic imaging
  • Emotions

ASJC Scopus subject areas

  • Neuroscience(all)
  • Clinical Psychology
  • Geriatrics and Gerontology
  • Psychiatry and Mental health

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