“There has to be more caring”: patient and care partner experiences of the disclosure of amyloid-β PET scan results

Abstract

Objectives

To explore patient and care partner experiences of receiving an amyloid scan result, with a focus on how clinician disclosure practices influenced patient and care partner emotional responses to the scan result and/or diagnosis.

Methods

Semi-structured interviews with 38 people with mild cognitive impairment or dementia and 62 care partners who experienced the disclosure of results from an amyloid PET scan as part of the CARE-IDEAS study. We used thematic analysis to analyze interview transcripts.

Results

We identified four aspects of the disclosure process that could influence patient and care partner emotional experiences of the scan result/diagnosis: (1) mode of delivery, (2) presence of a care partner, (3) clarity of the scan result explanation, and (4) discussion of post-scan treatment and support options.

Conclusions

Emotional experiences of an amyloid scan result can vary depending on how results are communicated. These findings support previous efforts to develop standard disclosure protocols. Scan results should be delivered in person with the care partner present. Clinicians should give a clear explanation of the result and its implications in an empathetic manner. Options for treatment and support should be discussed for all patients.

Keywords:

• Amyloid PET scans
• biomarkers
• MCI
• dementia
• Alzheimer’s disease
• disclosure

Disclosure statement

No potential conflicts of interest was reported by the author(s).

Additional information

Funding

Research reported in this publication was supported by the National Institute on Aging of the National Institutes of Health under Award Number R01AG053934 and by the American College of Radiology Imaging Network and the Alzheimer’s Association. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health, the American College of Radiology Imaging, or the Alzheimer’s Association. EC was supported by an AHRQ National Research Service Award T32 (Grant 5T32 HS000011-37). ND was supported by the National Institute on Aging of the National Institutes of Health under Award Numbers K01AG070284 and P30AG028716 (Dr. Schmader) and also supported by the Agency for Healthcare Research and Quality