Dataset Information

Communicating 5-Year Risk of Alzheimer's Disease Dementia: Development and Evaluation of Materials that Incorporate Multiple Genetic and Biomarker Research Results.

ABSTRACT:

Background

Cognitively normal (CN) older adults participating in Alzheimer's disease (AD) research increasingly ask for their research results-including genetic and neuroimaging findings-to understand their risk of developing AD dementia. AD research results are typically not returned for multiple reasons, including possible psychosocial harms of knowing one is at risk of a highly feared and untreatable disease.

Objective

We developed materials that convey information about 5-year absolute risk of developing AD dementia based on research results.

Methods

20 CN older adults who received a research brain MRI result were interviewed regarding their wishes for research results to inform material development (Pilot 1). Following material development, 17 CN older adults evaluated the materials for clarity and acceptability (Pilot 2). All participants were community-dwelling older adults participating in longitudinal studies of aging at a single site.

Results

Participants want information on their risk of developing AD dementia to better understand their own health, satisfy curiosity, inform family, and future planning. Some articulated concerns, but the majority wanted to know their risk despite the limitations of information. Participants found the educational materials and results report clear and acceptable, and the majority would want to know their research results after reviewing them.

Conclusion

These materials will be used in a clinical study examining the psychosocial and cognitive effects of offering research results to a cohort of CN older adults. Future AD research may incorporate the return of complex risk information to CN older adults, and materials are needed to communicate this information.

SUBMITTER: Mozersky J

PROVIDER: S-EPMC7877232 | biostudies-literature | 2021

REPOSITORIES: biostudies-literature

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Publications

Communicating 5-Year Risk of Alzheimer's Disease Dementia: Development and Evaluation of Materials that Incorporate Multiple Genetic and Biomarker Research Results.

Mozersky Jessica J Hartz Sarah S Linnenbringer Erin E Levin Lillie L Streitz Marissa M Stock Kristin K Moulder Krista K Morris John C JC

Journal of Alzheimer's disease : JAD 20210101 2

<h4>Background</h4>Cognitively normal (CN) older adults participating in Alzheimer's disease (AD) research increasingly ask for their research results-including genetic and neuroimaging findings-to understand their risk of developing AD dementia. AD research results are typically not returned for multiple reasons, including possible psychosocial harms of knowing one is at risk of a highly feared and untreatable disease.<h4>Objective</h4>We developed materials that convey information about 5-year ...[more]

PMID: 33337371

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Project description:Alzheimer's Disease (AD) biomarker measurement is key to aid in the diagnosis and prognosis of the disease. In the research setting, participant recruitment and retention and optimization of sample use, is one of the main challenges that observational studies face. Thus, obtaining accurate established biomarker measurements for stratification and maximizing use of the precious samples is key. Accurate technologies are currently available for established biomarkers, mainly immunoassays and immunoprecipitation liquid chromatography-mass spectrometry (IP-MS), and some of them are already being used in clinical settings. Although some immunoassays- and IP-MS based platforms provide multiplexing for several different coding proteins there is not a current platform that can measure all the stablished and emerging biomarkers in one run. The NUcleic acid Linked Immuno-Sandwich Assay (NULISA™) is a mid-throughput platform with antibody-based measurements with a sequencing output that requires 15μL of sample volume to measure more than 100 analytes, including those typically assayed for AD. Here we benchmarked and compared the AD-relevant biomarkers including in the NULISA against validated assays, in both CSF and plasma. Overall, we have found that CSF measures of Aß42/40, NfL, GFAP, and p-tau217 are highly correlated and have similar predictive performance when measured by immunoassay, mass-spectrometry or NULISA. In plasma, p-tau217 shows a performance similar to that reported with other technologies when predicting amyloidosis. Other established and exploratory biomarkers (total tau, p-tau181, NRGN, YKL40, sTREM2, VILIP1 among other) show a wide range of correlation values depending on the fluid and the platform. Our results indicate that the multiplexed immunoassay platform produces reliable results for established biomarkers in CSF that are useful in research settings, with the advantage of measuring additional novel biomarkers using minimal sample volume.

Project description:BackgroundIn the asymptomatic "preclinical" phase of Alzheimer's disease (AD), abnormal biomarkers indicate risk for developing cognitive impairment. Biomarker information is increasingly being disclosed to participants in research settings, and biomarker testing and results disclosure will be implemented in clinical settings in the future. Biomarker disclosure has potential psychosocial benefits and harms, impacting affected individuals and their support person(s). Limited data are available about with whom research participants share their results, information that will be necessary to develop disclosure protocols and post-disclosure resources. Additionally, existing research has been conducted in largely White cohorts, limiting applicability to future clinical populations.MethodsWe enrolled a diverse cohort of 329 adults (184 non-Hispanic White and 145 Black/African American individuals) who previously participated in AD research. After reviewing a vignette describing a hypothetical biomarker research study, participants indicated their anticipated willingness to share biomarker results with loved ones, and what reactions they anticipated from others. Using mixed-methods analysis, we identified responses related to willingness to share results.ResultsA majority (78.7%) were willing to share their results with support persons. Many (59.6%) felt it would not be difficult to share, and most (90.6%) believed their loved ones would be supportive. The most common reasons for sharing were to prepare for possible future AD (41.0% of respondents), while the most common reason for not sharing was to avoid worrying loved ones (4.8% of respondents). A total of 7.3% of respondents related reasons regarding being unsure about sharing.DiscussionParticipants' interest in sharing results supports integrating support persons into AD biomarker research, and may help maximize potential benefits for participants. Communicating with this "dyad" of research participant and support person(s) may improve involvement in research, and help prepare for implementation of clinical biomarker testing by clarifying communication preferences and the influence of support persons on psychosocial outcomes.

Project description:Background/objectivesPersons with Alzheimer disease and related dementias (ADRDs) require comprehensive care that spans health systems and community-based organizations. This study examined the clinical outcomes of a comprehensive dementia care program and identified subgroups who were more likely to benefit.DesignObservational, baseline and 1 year after intervention.SettingUrban, academic medical center.ParticipantsA total of 554 persons with dementia and their caregivers who had 1-year follow-up evaluations and data on clinical outcomes.InterventionHealth system-based comprehensive dementia care management program using nurse practitioner dementia care managers.MeasurementsPatient measures included the Mini-Mental State Examination (MMSE), the Functional Activities Questionnaire, Basic and Instrumental Activities of Daily Living scales, the Cornell Scale for Depression in Dementia, and the Neuropsychiatric Inventory Questionnaire (NPI-Q) Severity. Caregiver measures included the Modified Caregiver Strain Index, the Patient Health Questionnaire-9, NPI-Q Distress, and the Dementia Burden Scale-Caregiver). We used established minimal clinically important differences and lowest tertiles of baseline symptoms to define improving symptoms and maintaining low symptoms as clinical benefit for patients and caregivers.ResultsAt year 1, persons with ADRD improved on all scales, except MMSE and functional status measures; caregivers improved on all scales. Using validated instruments, 314/543 (58%) of patients, 282/447 (63%) of caregivers, and 376/501 (75%) of patients or caregivers demonstrated clinical benefit. In adjusted multivariate models, at year 1, more behavioral symptoms and fewer depression symptoms at baseline were associated with patient improvement; and fewer baseline depression symptoms were associated with maintaining low behavioral symptoms. Male caregiver sex, higher baseline caregiver burden, and caring for patients with fewer baseline depression symptoms were associated with caregiver improvement. Male caregiver sex and patients with fewer depression symptoms, fewer behavioral symptoms, and more functional impairment at baseline were associated with caregivers maintaining low burden at 1 year.ConclusionsHealth system-based comprehensive dementia care management is a promising approach to improving clinical outcomes, with benefits for both patients and caregivers. J Am Geriatr Soc 67:2267-2273, 2019.

Dataset Information

Communicating 5-Year Risk of Alzheimer's Disease Dementia: Development and Evaluation of Materials that Incorporate Multiple Genetic and Biomarker Research Results.

Background

Objective

Methods

Results

Conclusion

Publications

Communicating 5-Year Risk of Alzheimer's Disease Dementia: Development and Evaluation of Materials that Incorporate Multiple Genetic and Biomarker Research Results.

Similar Datasets

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