Patient and caregiver perspectives on amyloid positron emission tomography (PET) use are largely unexplored, particularly as compared with clinician views.
We surveyed clinicians, patients, caregivers, and dementia advocates on topics relating to an evidence-based guideline on amyloid PET use. Topic importance was rated on a 9-point scale. Patient stakeholder and clinician views were compared using the Mann-Whitney U test.
Patient representatives (n=107) rated all survey topics as equal to or more important than clinicians (n=114) except 1 item discussing potential harms of false-positive diagnoses. Differences between patient representative and clinician populations were greatest when comparing the competing values of false-positive and false-negative diagnoses and the value of testing asymptomatic individuals.
Patients and caregivers emphasized the importance of having a dementia diagnosis and placed more value on testing and outcomes for asymptomatic populations than clinicians. This underscores the importance of research investigating the effect of amyloid PET results on asymptomatic individuals and the need for amyloid PET ordering and disclosure standards.
*Department of Neurology, McKnight Brain Institute, University of Florida College of Medicine, Gainesville, FL
†Department of Neurology, University of Kansas Medical Center, Kansas City, KS
‡Department of Neurology, The Charles F and Joanne Knight Alzheimer Disease Research Center, Washington University School of Medicine, St Louis, MO
§American Academy of Neurology, Minneapolis, MN
∥Pharmaceutical Health Research Department, University of Maryland School of Pharmacy, Baltimore, MD
Supported by the Agency for Healthcare Research and Quality (AHRQ K08HS24159). AHRQ played no role in study design, the collection, analysis, or interpretation of data, or writing the manuscript.
The content is solely the responsibility of the authors and does not necessarily represent the official views of ARHQ. AHRQ shares the public access policy of the National Institutes of Health.
M.J.A. is supported by an ARHQ K08 career development award (K08HS24159) through which the current study was performed. She also receives research support from a 1Florida ADRC (AG047266) pilot grant and as the local PI of a Lewy Body Dementia Association Research Center of Excellence. She receives compensation from the American Academy of Neurology for work as an evidence-based medicine methodology consultant. G.S.D. is involved in research supported by an in-kind gift of radiopharmaceuticals from Avid Radiopharmaceuticals and is currently participating in clinical trials of antidementia drugs sponsored by Eli Lilly and Biogen. He holds stocks (>$10,000) in ANI Pharmaceuticals (a generic pharmaceutical company). C.D.M. receives consulting income from Bayer, Boehringer-Ingelheim, Illumina, Pfizer, Sanofi, and Regeneron. The remaining authors declare no conflicts of interest.
Reprints: Melissa J. Armstrong, MD, MSc, Department of Neurology, McKnight Brain Institute, University of Florida College of Medicine, PO Box 100236, Gainesville, FL 32601 (e-mail: firstname.lastname@example.org).
Received December 14, 2018
Accepted March 19, 2019