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) |