title: Disclosure of positron emission tomography amyloid imaging results: A preliminary study of safety and tolerability.
abstract: BACKGROUND
  Three (18)F-labeled radiopharmaceuticals have been Food and Drug Administration-approved for the identification of cortical amyloidosis in clinical settings. Although there has been strong debate among professionals as to the ethical and social consequences of disclosing such information, increasing numbers of participants are being recruited into secondary prevention trials for which they are likely to, and/or desire to, receive their positron emission tomography (PET) imaging results.
  
  
  METHODS
  Healthy older adults (n = 63, mean age = 62 years) enrolled in a preclinical Alzheimer's disease (AD) biomarkers trial, and 11 requested disclosure of PET amyloid imaging results to their treating neurologist, per institutional review board-approved study protocol. These individuals completed a follow-up psychoeducational program and structured interviews to assess impact of disclosure on several key psychological factors.
  
  
  RESULTS
  Four of 11 subjects demonstrated increased amyloid aggregation and reported that they were not surprised, particularly given their family histories and subjective memory concerns. All indicated that they had shared this information with pertinent significant others; they were satisfied with their level of social support, and the imaging results had motivated them to change their lifestyle by exercising more, changing their diet, and planning ahead. Amyloid-positive participants showed little change in levels of depressive, anxiety, and stress symptoms, subjective sense of memory impairment, or on measures of intrusion, avoidance, and hyperarousal, and reported risk of self-harm.
  
  
  CONCLUSIONS
  Disclosure of PET amyloid status did not significantly impact mood, subjective sense of memory impairment, or perceived risk of developing AD; nor was this associated with significant emotional impact, irrespective of actual amyloid burden status. Those subjects with increased amyloid burden were more likely than those without significant amyloidosis to make positive changes to their lifestyle (e.g., engaging in more exercise and changing their diet).
authors.affiliation: Department of Neurology, Warren Alpert Medical School of Brown University, Providence, RI, USA; The Florey Institute of Neuroscience and Mental Health, The University of Melbourne, Melbourne, Victoria, Australia.
authors.forename: Yen Ying
authors.initials: YY
authors.lastname: Lim
authors.affiliation: The Florey Institute of Neuroscience and Mental Health, The University of Melbourne, Melbourne, Victoria, Australia; Cogstate Ltd., Melbourne, Victoria, Australia.
authors.forename: Paul
authors.initials: P
authors.lastname: Maruff
authors.affiliation: Lifespan Clinical Research Center, Rhode Island Hospital, Providence, RI, USA.
authors.forename: Christine
authors.initials: C
authors.lastname: Getter
authors.affiliation: Department of Neurology, Warren Alpert Medical School of Brown University, Providence, RI, USA; Lifespan Clinical Research Center, Rhode Island Hospital, Providence, RI, USA. Electronic address: psnyder@lifespan.org.
authors.forename: Peter J
authors.initials: PJ
authors.lastname: Snyder
mesh_terms: D000368:Aged; D000544:Alzheimer Disease / Q000000981:diagnostic imaging* / Q000378:metabolism / Q000523:psychology* / Q000628:therapy; D016229:Amyloid beta-Peptides / Q000378:metabolism; D000814:Aniline Compounds; D001921:Brain / Q000000981:diagnostic imaging* / Q000378:metabolism; D030881:Disclosure / Q000941:ethics; D042241:Early Diagnosis; D005026:Ethylene Glycols; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic; D010465:Perception; D049268:Positron-Emission Tomography / Q000009:adverse effects / Q000941:ethics; D019275:Radiopharmaceuticals; D012306:Risk
chemical_list: D016229:Amyloid beta-Peptides; D000814:Aniline Compounds; D005026:Ethylene Glycols; D019275:Radiopharmaceuticals; C545186:florbetapir
keywords: Alzheimer disease; Amyloid; Amyloid-beta protein; Biomarkers; Diagnosis; Disclosure; Early detection; Ethics; PET imaging; Preclinical Alzheimer's disease