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Value of Knowing: Health-Related Behavior Changes following Amyloid PET Results Disclosure in Mild Cognitive Impairment

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The Journal of Prevention of Alzheimer's Disease Aims and scope Submit manuscript

Abstract

Background

Growing evidence supports the clinical utility of amyloid PET, however, whether patients at risk for dementia use knowledge of their brain amyloid status to alter their health behaviors remains unclear.

Objectives

To explore the effect of amyloid PET results disclosure on self-reported health behaviors in patients with mild cognitive impairment.

Design

Self-reported health behaviors were a secondary outcome of the Return of Amyloid Imaging Scan Results (RAISR) randomized clinical trial of amyloid PET results disclosure for individuals with mild cognitive impairment.

Setting

Academic medical center.

Participants

RAISR study participants included 82 patients with mild cognitive impairment who were 92% non-Hispanic white, 59% male, and, on average, 73 ± 8.61 years old with 16.25 ± 2.49 years of education.

Intervention

Participants were assigned to a scan group with the opportunity to have an amyloid PET scan and learn their results or to a control group consisting only of a mild cognitive impairment education session and no opportunity for an amyloid PET scan.

Measurements

A 14-item health behavior questionnaire supplemented with qualitative data from the open-ended text entries to describe “other” health behaviors and follow-up semi-structured interviews. Baseline assessments were conducted prior to group assignment. For the present analysis, 71 participants had available data and scan group participants were divided by amyloid status, creating three groups for comparison: amyloid positive, amyloid negative, and control (no scan).

Results

Over 12 months of follow-up, no significant differences were observed in lifestyle, vitamin/supplement use, stress reduction activities, cognitive stimulation, or advance directive completion. Amyloid-negative participants were less likely than controls to consider long-term care insurance (63.6% vs. 89.2%; P =.025), and to endorse behaviors classified as “other” (36.4% vs. 64.9%; P = 0.037). After adjusting for education level, gender, and Mini-Mental State Exam score, logistic regression showed that amyloid-negative patients were 74% less likely than controls to report “other” behaviors (OR = 0.26, 95% CI [0.08, 0.85], P = 0.025), and 78% less likely to consider long-term care insurance (OR= 0.22, 95% CI [0.06, 0.86], P = 0.03). Qualitative analysis of open-ended questionnaire data and supplemental interviews with scan group participants revealed “other” activities to include changes in areas like employment, driving, and residential status, and engagement in other non-medical activities (e.g., pursuing bucket lists).

Conclusions

This exploratory analysis of health-related behavior changes following amyloid PET disclosure suggests that the value of knowing one’s brain amyloid status may differ by scan result and encompass actions that focus more on maximizing quality of life than promoting cognitive health.

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Acknowledgements

We would like to express our sincere gratitude to two trained researchers from the team, Uchenna J. Mbawuike, Melissa L. Knox for their valuable contributions to the preliminary analysis of developing the coding structure. We also extend our immense appreciation to all the patients and their care partners who participated in this trial.

Funding

Funding: The RAISR (Return of Amyloid PET Scan Results) Study (ClinicalTrials.gov; NCT03121118) was supported by a grant from the National Institutes of Health, National Institute on Aging (NIA) R01AG046906-01 (JHL, PI) and by grants P50 AG005133 and P30 AG066468. Partial research support was provided by Avid Radiopharmaceuticals, a wholly owned subsidiary of Eli Lilly, Inc. JSR is supported by NIA grant P30 AG072931.

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Authors and Affiliations

  1. School of Nursing, University of Pittsburgh, Pittsburgh, USA

    Y. Wang, D. Ren, L. K. Tamres & J. H. Lingler

  2. School of Public Health, University of Michigan, Ann Arbor, USA

    J. S. Roberts

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  1. Y. Wang
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  2. D. Ren
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  3. J. S. Roberts
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  5. J. H. Lingler
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Corresponding author

Correspondence to J. H. Lingler.

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Conflict of interest disclosure: JHL has provided consultation to Genentech and Biogen.

Ethical standards: This study was approved by the University of Pittsburgh IRB. This manuscript is an original work and all authors contributed substantively to its development and have verified the accuracy of its content.

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Wang, Y., Ren, D., Roberts, J.S. et al. Value of Knowing: Health-Related Behavior Changes following Amyloid PET Results Disclosure in Mild Cognitive Impairment. J Prev Alzheimers Dis (2024). https://doi.org/10.14283/jpad.2024.50

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