Clinical Alzheimer's biomarker disclosure experiences among patients and family members
Melany Medina, Eunji Russ, Megan G. Witbracht, Dianxu Ren, Melissa L. Knox, Gil D. Rabinovici, Jennifer H. Lingler, Joshua D. GrillAbstract
INTRODUCTION
Few data are available on real‐world experiences of receiving biomarker‐informed Alzheimer's disease and related dementias (ADRD) diagnoses.
METHODS
We examined the frequency of in‐person versus remote disclosure and the duration of the clinical interaction among 63 dyads, including 19 patients and 44 family members receiving amyloid imaging results through the neNw Imaging Dementia—Evidence for Amyloid Scanning (IDEAS) study.
RESULTS
In‐person disclosure ( n = 36) was most common and similar in frequency for positive (57.5%) compared to negative (56.5%) amyloid results. In‐person visits (mean ± SD, 34.9 ± 19.5 minutes) were longer than phone telehealth visits (9.1 ± 5.2 minutes). Visits for individuals with positive compared to negative amyloid were observed to be longer for in‐person visits (38.3 ± 21.8 vs. 28.9 ± 13.1 minutes; p = 0.12) and phone telehealth visits (11.3 ± 4.4 vs. 6.3 ± 5.1 minutes; p = 0.06).
DISCUSSION
Clinicians may spend longer explaining positive compared to negative amyloid positron emission tomography (PET) results. Future research should examine how contextual factors and the availability of anti‐amyloid treatments changes these practices.