The need for personalization when sharing results of amyloid imaging for Alzheimer's disease: Insights from a randomized experimental study

Agnetha D. Fruijtier, Wiesje M. van der Flier, Ingrid van Maurik, Jetske van der Schaar, Yolande A.L. Pijnenburg, Ellen M.A. Smets, Leonie N.C. Visser*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

Objective: To study information needs after receiving abnormal amyloid-PET results, and how individual characteristics moderate effects of different communication strategies on information recall. Methods: In an online video-vignette experiment, seven vignettes each depicted a consultation of a physician sharing abnormal amyloid-PET results with a patient with Mild Cognitive Impairment(MCI), using different communication strategies. Healthy individuals (N = 1017; age 64 ± 8, 808(79 %) female), instructed to imagine themselves as the video-patient, viewed a randomly-assigned vignette and completed questionnaires to assess information needs and test moderation effects of gender, age, care-partner experience, health literacy, and coping. Results: Sixty-three percent of participants (645/1017) would have liked to receive more information, e.g., on prognosis, additional information sources, lifestyle advice, and/or treatment. Emotional support benefited information recall in women, but not men. Emotional support and visually presenting the PET-scan were less beneficial for individuals with a stronger avoidant coping style, compared to most other strategies. Conclusion: Most people wanted more information on varying topics, and gender and coping style influenced how communication strategies impacted information recall. PRACTICE IMPLICATIONS The importance of personalized information provision was emphasized, both in terms of what information is provided and how physicians share information, by paying attention to individuals’ needs and characteristics.

Original languageEnglish
Article number108587
JournalPatient Education and Counseling
Volume131
Early online date28 Nov 2024
DOIs
Publication statusE-pub ahead of print - 28 Nov 2024
Externally publishedYes

Keywords

  • Alzheimer's disease
  • Amyloid
  • Communication
  • Dementia
  • Disclosure
  • Information
  • Risk

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