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Step 0: Prior to in-person screening
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Send Amyloid Imaging Disclosure Process brochure prior to consent.
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Brochure content descriptions are provided in Table 2.
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Step 1A: Education and informed consent
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Assess knowledge of study and role of amyloid imaging in study.
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Use this information to structure review of the brochure.
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Assess motivation for joining study.
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Example questions:
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Tell me what you know about an amyloid PET scan?
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Why are you interested in having an amyloid PET scan?
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Why are you interested in joining the study?
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Conduct educational session.
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Cover brochure contents and tailor based on participant’s prior knowledge.
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Study staff should be skilled in communication.
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Explain meaning of elevated amyloid on PET scan, clarify that this does not necessarily mean that an individual will develop symptoms of Alzheimer’s disease
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Assess understanding of brochure.
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Use “teach back” method: “Can you tell me in your own words what we just talked about?”
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Focus on understanding of amyloid imaging and its role in study.
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Step 1B: Screening assessments
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Screen for anxiety and depression (for example: State-Trait Anxiety Inventory (STAI) [12] and Geriatric Depression Scale (GDS) [13])
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Decisions on eligibility will be study-specific and involve investigator’s clinical judgment.
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Step 2: Amyloid PET scan
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Participant undergoes amyloid PET scan.
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Conduct imaging on a separate day from consent.
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Do not disclose results on the day of imaging.
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Step 3A: Amyloid status disclosure - pre-disclosure
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Assess mood.
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Investigator/study staff should be skilled in communication and recognition of distress.
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(For example: STAI and GDS)
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Assess recent life stress.
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Assess willingness to receive result.
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If concerns arise, discuss possibility of delaying disclosure.
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Step 3B: Amyloid status disclosure
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Disclose amyloid status using language from the brochure.
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Disclose in-person, with time for questions.
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Give participant option of having family member or friend present.
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Provide a written summary.
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Assess understanding of amyloid status result.
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Example questions:
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What does that mean to you?
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Do you have any questions about your result?
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Step 4: Post-disclosure follow-up
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Conduct follow-up phone call one to three days post-disclosure.
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Assess well-being, distress, and impact of disclosure. (for example: Impact of Event Scale (IES) [14])
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Answer questions.
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Create appropriate follow-up plan based on participant’s responses.
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Step 5: Follow-up over study course
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Assess anxiety, depression, impact of disclosure.
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Study protocol should specify frequency of assessments and plans for additional monitoring if distress is observed.
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(for example: STAI, GDS, IES)
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