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Patel, Khushbu Jayeshkumar

University of British Columbia

Cerebrospinal fluid (CSF) testing for the core Alzheimer’s disease (AD) biomarkers (i.e., amyloid-β and tau proteoforms) has high diagnostic accuracy for early and accurate detection of AD pathology. The majority of literature documenting experiences of patients and their families with AD biomarker testing comes, not from biofluid biomarkers, but from amyloid positron emission tomography. Additionally, these experiences are from individuals participating in research studies, not those considering testing specifically for medical care, where disclosure of imaging results follows a strict protocol. In the context of AD CSF biomarker testing performed in medical care, the perspectives of patients undergoing testing, and their family/friends (‘care partners’), are lacking. To address this gap in knowledge, we aimed to describe patient and care partner experiences with AD CSF biomarker testing in medical care, and evaluate the impact of testing and result disclosure on their decision-making and planning. We undertook an observational, longitudinal trial: ‘Investigating the Impact of Alzheimer’s Disease Diagnostics in British Columbia’ (IMPACT-AD BC) study. The study included patients (n=142) undergoing AD CSF biomarker testing as part of their medical care for investigation of the etiology of their cognitive impairment. For the personal utility arm of the study, a subset of these patients (n=34), and their care partners (n=31), were interviewed post-biomarker result disclosure about the decision process around testing, impact of receiving results, wellness and lifestyle changes, and future planning. A majority of patients (90%) rated their decision to undergo testing as ‘easy’. Post-disclosure, majority (82%) reported overall positive feelings from having greater certainty and the ability to plan ahead, and results spurred them to adopt/continue healthy behaviors such as exercise (84%) and cognitive activities (54%). Care partners expressed relief from having more diagnostic certainty, increased appreciation of future caregiving responsibilities and a desire to connect with support resources. These perspectives of persons with lived experience in dementia provide new insight into the value of biomarker testing and should be included as part of evidence-guided considerations for pre-test counseling and result disclosure. Moreover, study findings identify an interval when patients and care partners are highly receptive to positive lifestyle and medical interventions.

Text

2024-05-31

Attribution-NonCommercial-NoDerivatives 4.0 International

http://hdl.handle.net/2429/84644

Pathology and Laboratory Medicine

University of British Columbia

UBCV

http://creativecommons.org/licenses/by-nc-nd/4.0/