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Table 1 Amyloid imaging disclosure process instructional manual

From: Development of a process to disclose amyloid imaging results to cognitively normal older adult research participants

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