MedicalResearch.com Interview with:
Liana Apostolova, MD, MSc, FAAN
Barbara and Peer Baekgaard Professor in Alzheimer’s Disease Research
Professor in Neurology, Radiology. Medical and Molecular Genetics
Indiana University School of Medicine
Indiana Alzheimer’s Disease Center
Indianapolis, IN 46202
MedicalResearch.com: What is the background for this study?
Response: While many studies have evaluated the diagnostic or prognostic implications associated with amyloid PET, few have explored its effects on the patient or caregiver. Amyloid imaging does not only help clinicians with their diagnosis and management. It also affects patient and caregiver decisions related to lifestyle, financial and long-term care planning, and at times also employment. Few studies to date have explored patient and caregiver views on the clinical use of amyloid PET and the potential benefits they could derive from having more precise diagnosis.
MedicalResearch.com: What are the main findings?
Response: This was a survey of patients’ and caregivers’ opinions regarding the potential utility of amyloid imaging in general, as well as their perceptions in regards to the current lack of insurance coverage for this diagnostic test in the US. We used Trial Match and received hundreds of responses from 48 out of 50 states of the US as well as Canada, Greece and the Dominican Republic. 88% of the respondents felt at odds with the lack of insurance coverage for the diagnostic use of amyloid imaging in the US. Some quotes are listed below (can get you more if you’d like of either the restrained and the upset type if you’d like). Only 9 out of our 510 responders felt the current lack of coverage is justifiable but interestingly all 9 of these responders stated they would pursue an amyloid PET scan if recommended by their doctor (99.6% of the sample stated the same).
We also asked how will the information contained in the amyloid PET scan might help them. Respondents felt that early diagnosis obtained through amyloid imaging would be beneficial for legal planning (87.5%), financial planning (76.9%), seeking information on how to pursue disability insurance (60.0%), life insurance (49.0%), long-term care (67.6%). Additional benefits were being able to discuss a more definitive diagnosis with family members (91.6%) and learning more about their diagnosis (92.9%). Some respondents mentioned also clinical trials participation, finding appropriate support groups, finding home care and alternative housing options, and beginning early stage medical treatments.
I feel it would have helped our family be more prepared and get an earlier diagnosis of my mother’s Alzheimer’s Disease. It would have helped us make better choices in her long-term care.
Judging by the severe impact and pervasive nature of this disease and related symptoms, I consider it irresponsible for health care providers not to be actively screening for individuals–especially for those who might benefit from an early diagnosis.
MedicalResearch.com: What is the background for this study? What are the main findings?
Response: Our data suggest that both patients and caregivers feel that amyloid PET imaging would be beneficial in clinical practice.
They seem to believe that diagnosis assisted by such imaging would be useful for long-term planning.
Disclosure: This work was supported by the Alzheimer’s Association through the Trail Match program.
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AAIC 2017 abstract:
Patient and Caregiver Assessment of the Benefits from the Clinical Use of Amyloid PET Imaging
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