How Accurately Do Patients and Their Care Partners Report Results of Amyloid-β PET Scans for Alzheimer’s Disease Assessment?

Article type: Research Article

Authors: James, Hailey J.^{a; b} | Van Houtven, Courtney Harold^{b; c} | Lippmann, Steven^b | Burke, James R.^d | Shepherd-Banigan, Megan^{b; c} | Belanger, Emmanuelle^{e; f} | Wetle, Terrie Fox^f | Plassman, Brenda L.^{d; g; *}

Affiliations: [a] Department of Health Policy and Management, University of North Carolina, Chapel Hill, NC, USA | [b] Department of Population Health Sciences, Duke University, Durham, NC, USA | [c] Health Services Research and Development in Primary Care, Durham Veterans Affairs Medical Center, Durham, NC, USA | [d] Department of Neurology, School of Medicine, Duke University, Durham, NC, USA | [e] Center for Gerontology and Healthcare Research, School of Public Health, Brown University, Providence, RI, USA | [f] Department of Health Services, Policy and Practice, School of Public Health, Brown University, Providence, RI, USA | [g] Department of Psychiatry and Behavioral Sciences, School of Medicine, Duke University, Durham, NC, USA

Correspondence: [*] Correspondence to: Brenda Plassman, PhD, 2200 W. Main Street, Durham, NC 27705, USA. Tel.: +1 919 668 1586; E-mail: [email protected].

Abstract: Background:Amyloid-β PET scans will likely become an integral part of the diagnostic evaluation for Alzheimer’s disease if Medicare approves reimbursement for the scans. However, little is known about patients’ and their care partners’ interpretation of scan results. Objective:This study seeks to understand how accurately patients with mild cognitive impairment (MCI) or dementia and their care partners report results of amyloid-β PET scans and factors related to correct reporting. Methods:A mixed-methods approach was used to analyze survey data from 1,845 patient-care partner dyads and responses to open-ended questions about interpretation of scan results from a sub-sample of 200 dyads. Results:Eighty-three percent of patients and 85% of care partners correctly reported amyloid-β PET scan results. Patients’ higher cognitive function was associated with a small but significant decrease in the predicted probability of not only patients accurately reporting scan results (ME: –0.004, 95% CI: –0.007, –0.000), but also care partners accurately reporting scan results (ME: –0.006, 95% CI: –0.007, –0.001), as well as decreased concordance between patient and care partner reports (ME: –0.004, 95% CI: –0.007, –0.001). Content analysis of open-ended responses found that participants who reported the scan results incorrectly exhibited more confusion about diagnostic terminology than those who correctly reported the scan results. Conclusion:Overall, patients with MCI or dementia showed high rates of accurate reporting of amyloid-β PET scan results. However, responses to questions about the meaning of the scan results highlight the need for improved provider communication, including providing written explanations and better prognostic information.

Keywords: Alzheimer’s disease, amyloid PET, caregivers, dementia, mild cognitive impairment

DOI: 10.3233/JAD-190922

Journal: Journal of Alzheimer's Disease, vol. 74, no. 2, pp. 625-636, 2020