ABIDE Communication: Amyloid imaging and shared decision making in dementia diagnosis

ABIDE Communication: Shared decision making in dementia diagnosis in the era of amyloid imaging

Project aim: ABIDE communication aims to provide insight on which information to address during the diagnostic encounter in clinical practice, and how to best communicate it in the era of amyloid PET.

Background: Development of new diagnostic tests, such as amyloid-PET scans, have changed the field of alzheimer diagnosis, enabling diagnosis before the onset of dementia. This complicates clinician-patient communication and results in many new questions and dilemmas. Particularly since findings on group level do not translate directly to an individual. Shared decision making is preferable, but not yet common practice in this field.

Approach: To identify a core list of informational topics we performed an online Delphi consensus study, involving 80 clinicians, 66 patients and 76 care-partners. An analysis of the 25 identified topics as addressed in current practice was performed based on audiotaped consultations.

Individualised prediction models were developed based on the own Amsterdam Dementia Cohort in combination with international cohorts. These models allow the interpretation of diagnostic test result on an individual level.

Finally, best practices were studied for amyloid disclosure by performing a Randomised Controlled Trial with an online video-vignette design. Communication strategies varied across enacted videotaped consultations. 1156 healthy individuals aged 50 or older were included, instructed to imagine themselves in the situation of the video-patient, and evaluated their understanding, emotional impact and satisfaction.

Deliverables: Based on the project results, an evidence-based, 25-item topic list of informational topics was developed to be addressed during the diagnostic encounter. In addition, individualised prediction models were constructed to facilitate the interpretation of an amyloid PET in the context of a patient’s own characteristics. By making the topic list easily accessible, e.g. via dementie.nl (Alzheimer Nederland), it can help patients and care-partners to better prepare for the consultation and stimulate participation in the diagnostic encounter.

Read about ADappt here.

With the availability of diagnostic tests that allow the measurement of Alzheimer pathology during life, particularly amyloid PET, we face new challenges. ABIDE communication aims to provide insight and advice to clinical practice on the information memory clinic patients want during their diagnostic process and how to best communicate it in the era of amyloid imaging, early diagnosis, and risk prediction.
Technology Readiness Level (TRL)
5 - 6
Time period
36 months