How Accurately Do Patients and Their Care Partners Report Results of Amyloid-β PET Scans for Alzheimer's Disease Assessment?
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2020-01
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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.Type
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James, Hailey J, Courtney Harold Van Houtven, Steven Lippmann, James R Burke, Megan Shepherd-Banigan, Emmanuelle Belanger, Terrie Fox Wetle, Brenda L Plassman, et al. (2020). How Accurately Do Patients and Their Care Partners Report Results of Amyloid-β PET Scans for Alzheimer's Disease Assessment?. Journal of Alzheimer's disease : JAD, 74(2). pp. 625–636. 10.3233/jad-190922 Retrieved from https://hdl.handle.net/10161/33774.
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Scholars@Duke
Courtney Harold Van Houtven
Dr. Courtney Van Houtven is a Professor in The Department of Population Health Science, Duke University School of Medicine and Duke-Margolis Center for Health Policy. Dr. Van Houtven’s aging and economics research interests encompass long-term care financing, intra-household decision-making, unpaid family and friend care, and home- and community-based services. She examines how family caregiving affects health care utilization, expenditures, health and work outcomes of care recipients and caregivers. She is also interested in understanding how best to support family caregivers to optimize caregiver and care recipient outcomes. She leads a mixed methods R01 study as PI from the National Institute on Aging that will assess the value of "home time" for persons living with dementia and their caregivers (RF1 AG072364). She also directs CASCADE: Center for Advancing the Science of Complex Care: Aging, Disability, and Equity, a grant-funded center within DPHS.
Areas of expertise: Health Economics and Health Services Research
James Robert Burke
My research focuses on the characterization of cognitive change with age. I am specifically interested in delineating the change between normal and pathologic changes associated with aging and developing therapies to delay decline.
My area of expertise is neurodegenerative diseases and dementia with an emphasis on Alzheimer's disease.
Keywords: Alzheimer's disease.
Megan E Shepherd-Banigan
Dr. Megan Shepherd-Banigan designs research studies to improve the health, emotional well-being, and social functioning of adults with mental and physical disabilities. Her methods combine empirical approaches that address methodologically challenging research questions in health systems and policy research. Dr. Shepherd-Banigan uses large survey and administrative datasets to evaluate the impact of policies that support family members to care for adults with disabilities.
Dr. Shepherd-Banigan won a VA Career Development Award from 2019-2024 and is studying ways to strengthen family support for veterans under-going traumatic stress treatment. She also leads a project that surveys family caregivers of Vietnam-era veterans who might be eligible for expanded support services under the VA Mission Act to evaluate program impacts. As co-investigator on an NIA-funded CARE IDEAS study (Terri Wetle, PI) , she is investigating end-of-life-care planning and well-being among dementia care dyads. Finally, Dr. Shepherd-Banigan is leading a project in partnership with the Rosalynn Carter Institute for Caregivers to identify creative empirically-based approaches to support family caregivers.
Brenda Lee Plassman
My research interests include the following areas:
1) Epidemiological studies to examine the prevalence and incidence of dementia and cognitive impairment, not dementia (CIND)
2) Studies examining risk and protective factors for dementia and CIND
3) Behavioral genetics of aging and dementia with an emphasis on twin studies
4) Long term outcomes of traumatic brain injury
5) Oral health and cognition in later life
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