Anticipated reactions to learning Alzheimer’s disease biomarker results

Clark, Lindsay R.; Erickson, Claire M; Jonaitis, Erin M.; Ma, Yue; Chin, Nathaniel A.; Basche, Kristin E; Ketchum, Frederick B; Gleason, Carey E.

doi:10.1186/s13195-022-01027-2

Cited by 5 publications

(12 citation statements)

References 35 publications

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“…The survey included measures assessing experience with and concern about AD, 9 perceived health, health locus of control (LOC), 10 brain health social norms, 11 research attitudes, 12 and chronic experiences of perceived discrimination due to race, ethnicity, self-identified sex, age, or other interpersonal characteristics 13 . We previously reported that results of exploratory and confirmatory factor analysis revealed an underlying factor structure comprising 14 items assessing anticipated psychological impact (3 factors: distress, stigma, cognitive symptoms) and 14 items assessing anticipated behavior change (2 factors: planning, dementia risk-reduction) associated with learning AD biomarker results and confirmed measurement invariance across White and Black or African American participants in our cohort 4 . These 28 items were either adapted from existing questionnaires 14,15 or developed by the study team.…”

Section: Methodssupporting

confidence: 82%

“…13 We previously reported that results of exploratory and confirmatory factor analysis revealed an underlying factor structure comprising 14 items assessing anticipated psychological impact (3 factors: distress, stigma, cognitive symptoms) and 14 items assessing anticipated behavior change (2 factors: planning, dementia risk-reduction) associated with learning AD biomarker results and confirmed measurement invariance across White and Black or African American participants in our cohort. 4 These 28 items were either adapted from existing questionnaires 14,15 or developed by the study team. For 8 items, participants were asked to rate the importance of each item as a reason to learn their biomarker results.…”

Section: Methodsmentioning

confidence: 99%

“…In light of this knowledge gap, we administered a telephone survey, 4 to over 300 participants in the Wisconsin ADRC and WRAP cohorts, including 44% Black or African American participants enrolled through the African American’s Fighting Alzheimer’s in Mid-life study. The overall objective was to identify contextual factors associated with willingness to enroll in biomarker studies that disclose results and subsequent reactions related to learning results.…”

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confidence: 99%

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Anticipated Psychological or Behavioral Reactions to Learning Alzheimer Biomarker Results

Clark,

Erickson,

Chin

et al. 2023

Alzheimer Disease &Amp; Associated Disorders

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Background: As Alzheimer disease (AD) biomarker testing becomes more widely available, adults may opt to learn results. Considering potential reactions to learning biomarker results can guide prebiomarker and postbiomarker testing education and counseling programs. Methods: Cognitively healthy adults enrolled in observational Alzheimer research responded to a telephone survey about learning AD risk information (n=334; 44% Black or African American; mean age=64.9±7.0). Multiple linear regression models tested if contextual factors predicted anticipated psychological impact (distress, stigma, and cognitive symptoms) or behavior change (planning and risk-reduction). Secondary analyses tested for differences in relationships by racial identity. Results: Internal health locus of control, concern about AD, self-identified sex, education, family dementia history, and belief in AD modifiability predicted anticipated psychological impact. Concern about AD, age, racial identity, belief in AD modifiability, research attitudes, and exposure to brain health-related social norms predicted anticipated behavior change. For Black respondents, there were no sex differences in anticipated distress, whereas there were stronger relationships between health locus of control, brain health social norms, and education on outcomes compared with White respondents. Conclusions: Results may inform personalized and culturally tailored biomarker testing education and counseling to minimize psychological impacts and increase behavior change related to learning AD risk information.

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Section: Methodssupporting

confidence: 82%

Section: Methodsmentioning

confidence: 99%

mentioning

confidence: 99%

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Anticipated Psychological or Behavioral Reactions to Learning Alzheimer Biomarker Results

Clark,

Erickson,

Chin

et al. 2023

Alzheimer Disease &Amp; Associated Disorders

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“…About one-third of our participants who stated they were already hesitant about research indicated they were worried or uncertain about being given abnormal test results. This aligns with researchers’ concerns about causing psychological harm or creating uncertainty about what the meaning of results – particularly with asymptomatic individuals [15, 16, 32–35]. Future research is needed to determine how to ethically and meaningfully return results to participants, particularly those from diverse populations.…”

Section: Discussionmentioning

confidence: 92%

Differences in Motivators, Barriers, and Incentives between Black and White Older Adults for Participation in Alzheimer’s Disease Biomarker Research

Eliacin

Polsinelli

Epperson

et al. 2022

Preprint

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Introduction: The study aimed to identify strategies to increase older Black adults' participation in Alzheimer's disease (AD) biomarker research studies. Methods: 399 community-dwelling Black and White older adults (age >55) who had never participated in AD research completed a survey about their perceptions of AD research involving blood draw, MRI, and PET. Results: Although most participants expressed interest in AD biomarker research (Black participants: 63.0%, White participants: 80.6%), Black participants were significantly more hesitant than White participants (28.9% vs 15.1%), were more concerned about study risks, (30.8% vs. 11.1%) and perceived multiple barriers to participating in brain scans. Lack of information was perceived as a barrier to participation across groups (45.8%) and return of study results was perceived as a participation incentive (78.9-85.7%) (Ps < .05). Discussion: Strategies to increase Black older adult participation in AD research may include disseminating additional study information and return of results.

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“…Several drafts were reviewed by the study team, Survey Center, and external content expert consultants. The ABS has been found to be a reliable and validated measure of anticipated reactions when communicating AD biomarker results to research participants, 25 and results about the willingness to enroll in biomarker studies have been previously described. 26 To assess willingness to share biomarker results, we used a vignette describing a hypothetical AD biomarker study (see Table 1).…”

Section: Surveymentioning

confidence: 99%

The importance of the dyad: Participant perspectives on sharing biomarker results in Alzheimer's disease research

Ketchum

Chin

Erickson

et al. 2023

A&D Transl Res & Clin Interv

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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.

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Anticipated reactions to learning Alzheimer’s disease biomarker results

Cited by 5 publications

References 35 publications

Anticipated Psychological or Behavioral Reactions to Learning Alzheimer Biomarker Results

Anticipated Psychological or Behavioral Reactions to Learning Alzheimer Biomarker Results

Differences in Motivators, Barriers, and Incentives between Black and White Older Adults for Participation in Alzheimer’s Disease Biomarker Research

The importance of the dyad: Participant perspectives on sharing biomarker results in Alzheimer's disease research

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