Disclosure of preclinical Alzheimer's disease biomarker results in research and clinical settings: Why, how, and what we still need to know

Erickson, Claire M; Chin, Nathaniel A.; Johnson, Sterling C.; Gleason, Carey E.; Clark, Lindsay R.

doi:10.1002/dad2.12150

Cited by 33 publications

(49 citation statements)

References 47 publications

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“…Prior studies have examined the effects of disclosing AD dementia risk to cognitively unimpaired persons and also to care partners of adults with mild cognitive impairment (MCI). 22,23 This study is the first to examine how such disclosure affects cognitively unimpaired persons' family members and friends; we find important parallels with past research. Our results suggest that, if adults with preclinical AD become "patients-in-waiting," their family members become "pre-caregivers," offering support in the present and anticipating future care responsibilities.…”

Section: Discussionsupporting

confidence: 63%

Section: Discussionmentioning

confidence: 54%

See 1 more Smart Citation

Family members' perspectives on learning cognitively unimpaired older adults' amyloid‐β PET scan results

Largent

Abera

Harkins

et al. 2021

J American Geriatrics Society

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Background/Objectives: Disclosure of Alzheimer's disease (AD) risk information to cognitively unimpaired older adults may become more common if preclinical AD is shown to be identifiable and amenable to treatment. Little, however, is known about how families will react to this information. Design and Setting: Semi-structured telephonic interviews.Participants: Seventy study partners (mean age = 68 [±11]; 50% female; 70% spouses/significant others; 18% children, siblings; 12% friends) of cognitively unimpaired adults who learned a personalized AD dementia risk estimate and an amyloid-β PET scan result through their participation in preclinical AD research. Measurement:Interviewees were asked about their desire for information regarding their family member's AD dementia risk, baseline expectations of risk, understanding of amyloid-β PET scan results, and the impact of AD dementia risk information on emotions, health behaviors, and future plans, as well as on perceptions of their family member's or friend's memory.Results: Interviewees generally understood the AD dementia risk information (83%) and considered it valuable (75%). Risk information perceived as favorable elicited feelings of happiness and relief; unfavorable information elicited disappointment, as well as increased awareness of the participants' memory and monitoring for incipient changes in cognition. While noting that AD dementia risk information was not medically actionable at this time due to the lack of disease-modifying therapies, some interviewees described changes to their family members' and their own health behaviors and future plans. Conclusion:Guidelines for the disclosure of AD dementia risk estimates and biomarker results to cognitively unimpaired adults should account for the needs and interests of individuals and their family members, who may step into a pre-caregiver role.

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Section: Discussionsupporting

confidence: 63%

Section: Discussionmentioning

confidence: 54%

Family members' perspectives on learning cognitively unimpaired older adults' amyloid‐β PET scan results

Largent

Abera

Harkins

et al. 2021

J American Geriatrics Society

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“…This was somewhat surprising for the strategy focused on study benefits, given that we expected participants with dementia to differentially benefit from tactics that offer social support services and make study test results such as routine laboratories, neuropsychological measures, and biomarker results more accessible to them and their families. A possible explanation for the lack of interaction is that these benefits were viewed as universally important to participants, regardless of their diagnostic category [ 27 ]. Alternatively, some of the tactics with the greatest potential for effect modification (e.g., access to a clinical care or a social worker) were employed by a very small number of ADRCs.…”

Section: Discussionmentioning

confidence: 99%

Strategies Associated with Retaining Participants in the Longitudinal National Alzheimer’s Coordinating Center Uniform Data Set Study

Salazar

Ritchie

Gillen

et al. 2022

JAD

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Background: Best approaches for retaining research participants in Alzheimer’s disease cohort studies are understudied. Objective: Using data from the National Alzheimer’s Coordinating Center Uniform Data Set, we evaluated the associations of unique strategies with participant retention across Alzheimer’s Disease Research Centers and explored potential effect modification by race/ethnicity and diagnostic group. Methods: We examined retention at the first follow-up visit among participants enrolled during 2015–2017. Structured surveys ascertained 95 retention tactics among 12 strategies. Strategy-specific summary scores were created based on the number of implemented tactics for each strategy and grouped into tertiles. Generalized estimating equations were constructed to evaluate associations of strategy scores and the odds of retention, controlling for age, sex, education, race and ethnicity, study partner type, marital status, visit length, battery length, and diagnostic group. Separate models were stratified by race/ethnicity and diagnostic group. Effect modification was formally tested with interaction terms. Results: Among 5,715 total participants enrolled, 4,515 were Non-Hispanic White (79%), 335 were Hispanic/Latino (6%), 651 were Non-Hispanic Black (11%), and 214 were Non-Hispanic Asian (4%). Compared to the lowest tertile of scores, the highest tertile of scores involving improvement in study personnel and communication of study requirements and details were associated with 61% higher odds of retention in fully adjusted models (adjusted Odds Ratios [aOR] = 1.61, 95% Confidence Interval [CI] = 1.05–2.47 and aOR = 1.55, 95% CI = 1.03–2.35, respectively). We did not find evidence for effect modification. Conclusion: In the setting of limited resources, specific retention strategies may be more valuable than others.

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“…Although inherited susceptibility is beyond the scope of our review, extensive research on the impact of revealing an increased probability [50-57] or absolute certainty [58-60] of developing dementia has demonstrated that catastrophic outcomes are rare, knowledge of the test results does not affect cognition and participants also perceive benefits. So far, evidence on disclosing biomarkers information is limited, but the few available studies suggest it is safe and actionable [61-66]. However, stigmatization and discrimination are concerns that need further scrutiny [67, 68].…”

Section: Discussionmentioning

confidence: 99%

Considerations regarding a diagnosis of Alzheimer’s Disease before dementia: a systematic review

Schaar

Visser

Bouwman

et al. 2021

Preprint

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Introduction: The NIA-AA research framework proposes a purely biological definition of Alzheimer's Disease (AD). This implies AD can be diagnosed based on biomarker abnormalities. While this brings opportunities, it also raises challenges. Methods: We conducted a systematic review by searching PubMed for publications on conveying AD biomarker results to individuals without dementia. Content was analyzed inductively. Results: We included 25 publications. From these we extracted 26 considerations, which we grouped according to their primary relevance to a clinical, personal, or societal context. Clinical considerations include (lack of) validity, utility, and disclosure protocols. Personal considerations cover psychological and behavioral implications, as well as the right to (not) know. Societal considerations comprise the risk of misconception, stigmatization, and discrimination. Overall, views were heterogeneous and often contradictory. Discussion: Perceptions on a diagnosis of AD before dementia vary widely. Empirical research is required, taking perspectives of medical professionals and the general public into account.

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Disclosure of preclinical Alzheimer's disease biomarker results in research and clinical settings: Why, how, and what we still need to know

Cited by 33 publications

References 47 publications

Family members' perspectives on learning cognitively unimpaired older adults' amyloid‐β PET scan results

Family members' perspectives on learning cognitively unimpaired older adults' amyloid‐β PET scan results

Strategies Associated with Retaining Participants in the Longitudinal National Alzheimer’s Coordinating Center Uniform Data Set Study

Considerations regarding a diagnosis of Alzheimer’s Disease before dementia: a systematic review

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