A Relationship-Oriented Model of Research Participation: The Brain Health Community Registry

Abstract Historically excluded and minoritized populations are significantly under-included in health studies of Alzheimer’s disease and related dementias (ADRD) despite bearing a disproportionate burden of disease—evidenced by higher incidence, prevalence, and poorer health outcomes. Meaningful progress toward identifying and alleviating causes of health disparities in ADRD necessitate effective and scalable approaches for broadening inclusion in research. Rigorous studies evaluating research participation among minoritized populations are limited and have predominantly focused on individual-level factors and behavioral change (i.e. religiosity, willingness). These approaches frequently overlook the influence of unequally distributed structural and social determinants on participation despite the compounded financial, social, emotional, and logistical consequences that result from ADRD. Using an intersectional and social justice lens, we developed the Participant and Relationship-Oriented Research Engagement Model, which characterizes research as a form of relationship and extends social determinants frameworks to the context of research participation. We report core components of the model and its application in the design and preliminary evaluation of the Brain Health Community (BHC) Registry, which features proactive and systematic evaluation of potential unmet needs among prospective participants, and connections to relevant services (i.e. respite care, adaptive devices). Preliminary testing of the model and participant feedback on the BHC suggest it is a feasible approach to research engagement, and that associated assessment tools and resource protocols are acceptable and sufficiently adaptable to heterogeneous sets of unmet needs. Primary challenges include ongoing assessment of engagement and routine changes in service ability, which can be addressed through community-based resource networks.

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Insights From African American Older Adults on Brain Health Research Engagement: “Need to See the Need”

Journal of Applied Gerontology ◽

10.1177/0733464820902002 ◽

2020 ◽

pp. 073346482090200

Author(s):

Shoshana H. Bardach ◽

Markeda Yarbrough ◽

Charlene Walker ◽

Doris L. Alfred ◽

Eseosa Ighodaro ◽

...

Keyword(s):

Older Adults ◽

African American ◽

Health Research ◽

Research Participation ◽

Elevated Risk ◽

Brain Health ◽

Research Engagement ◽

Disease Research ◽

Dementia Research ◽

Barriers And Opportunities

African Americans (AAs) have an elevated risk of developing dementia, yet are underrepresented in clinical research. This project uses a community-engaged photovoice approach to add to existing understanding of barriers and facilitators to AA participation in Alzheimer’s disease research and identify strategies to enhance engagement. Three AA research advocates served as community facilitators to identify and guide groups of AA adults through an eight to nine session photovoice project. Group sessions involved discussions and sharing of images pertaining to various prompts in the area of brain health and research participation. Sessions were audiotaped and transcribed verbatim. Participants identified three categories of barriers to AA research participation: (a) Mistrust, (b) avoidance and fear of acknowledging problems, and (c) seeing the risks of research but not the need. Participants shared suggestions and approaches for ameliorating each of these barriers. This process revealed unique insights into barriers and opportunities for increasing AA engagement in aging and dementia research.

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INSIGHTS FROM AFRICAN AMERICAN OLDER ADULTS ON BRAIN HEALTH RESEARCH ENGAGEMENT: NEED TO SEE THE NEED

Innovation in Aging ◽

10.1093/geroni/igz038.1622 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S433-S434 ◽

Cited By ~ 1

Author(s):

Shani H Bardach ◽

Markeda Yarbrough ◽

Charlene Walker ◽

Doris L Alfred ◽

Eseosa Ighodaro ◽

...

Keyword(s):

African American ◽

Brain Aging ◽

Research Participation ◽

Brain Health ◽

Aging Research ◽

Research Engagement ◽

Novel Approach ◽

Engagement Process ◽

Barriers And Opportunities ◽

Clinical Research Trials

Abstract Recruitment of African American (AA) participants into clinical research trials in the area of aging and dementia is a major problem facing the field. Although AAs are at a significantly elevated risk of developing Alzheimer’s disease (AD), they are underrepresented in clinical trials and research studies. While previous research has identified a number of barriers to participation, relatively little is known about how to overcome these barriers and engage AA individuals in research. Photovoice may provide a novel approach to advance our understanding of AA perceptions in regards to barriers and strategies to increase AA engagement in brain aging research. The purpose of this project is to add to existing understanding of barriers and facilitators and identify strategies to enhance engagement. Three AA research advocates served as community facilitators to identify and guide groups of AA adults though an 8-10 session photovoice project. Group sessions involved discussions and sharing of images pertaining to various prompts in the area of brain health and research participation. Sessions were audio-taped and transcribed verbatim and photos were uploaded. Participants identified four categories of barriers to AA research participation: Mistrust, the belief that all research involves medication, avoidance and fear of acknowledging problems, and seeing the risks of research but not the need. Participants had various suggestions and approaches for ameliorating each of these barriers. This photovoice community engagement process revealed unique insights into barriers and opportunities for increasing AA engagement in brain aging research.

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Hispanic Perspectives on Parkinson’s Disease Care and Research Participation

Journal of Alzheimer s Disease ◽

10.3233/jad-210231 ◽

2021 ◽

pp. 1-11

Author(s):

Lisa Damron ◽

Irene Litvan ◽

Ece Bayram ◽

Sarah Berk ◽

Bernadette Siddiqi ◽

...

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Native Language ◽

Research Participation ◽

Ongoing Research ◽

Research Recruitment ◽

Research Opportunities ◽

Research Engagement ◽

Wide Range ◽

Tertiary Center

Background: Hispanics are under-represented in Parkinson’s disease (PD) research despite the importance of diversity for results to apply to a wide range of patients. Objective: To investigate the perspective of Hispanic persons with Parkinson disease (PWP) regarding awareness, interest, and barriers to participation in research. Methods: We developed and administered a survey and qualitative interview in English and Spanish. For the survey, 62 Hispanic and 38 non-Hispanic PWP linked to a tertiary center were recruited in Arizona. For interviews, 20 Hispanic PWP, 20 caregivers, and six physicians providing service to Hispanic PWP in the community were recruited in California. Survey responses of Hispanic and non-Hispanic PWP were compared. Major survey themes were identified by applying grounded theory and open coding. Results: The survey found roughly half (Q1 54%, Q2 55%) of Hispanic PWP linked to a tertiary center knew about research; there was unawareness among community Hispanic PWP. Most preferred having physician recommendations for research participation and were willing to participate. Hispanics preferred teams who speak their native language and include family. Research engagement, PD knowledge, role of family, living with PD, PD care, pre-diagnosis/diagnosis emerged as themes from the interview. Conclusion: Barriers exist for participation of Hispanic PWP in research, primarily lack of awareness of PD research opportunities. Educating physicians of the need to encourage research participation of Hispanic PWP can address this. Physicians need to be aware of ongoing research and should not assume PWP disinterest. Including family members and providing research opportunities in their native language can increase research recruitment.

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Social Volunteering in Aging Adults Increases Regions of the Amygdala and Correlates With Enhanced Generativity

Innovation in Aging ◽

10.1093/geroni/igaa057.2881 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 795-795

Author(s):

Michelle Carlson

Keyword(s):

Social Engagement ◽

Controlled Trial ◽

Well Being ◽

Health Study ◽

Brain Health ◽

Volunteer Program ◽

Intention To Treat ◽

Intervention Impact ◽

Aging Adults ◽

The Brain

Abstract The Brain Health Study (BHS) of the Baltimore Experience Corps Trial (BECT) examined whether a randomized, controlled trial of an intergenerational social volunteer program, entitled Experience Corps, increased subregions of the amygdala related to socioemotional memory and risk for Alzheimer’s disease in aging adults. We further assessed functional correlates of these intervention-related changes and changes in aging adults’ developmental need to be generative, or, to give back to the well-being of others. The BHS simultaneously randomized 112 men and women (59 intervention; 53 control) within BECT to evaluate intervention impact on biomarkers of brain health at baseline and annual follow-ups during the two-year trial. Intention-to-treat analyses revealed program-specific increases in the shape of the centromedial and basomedial regions of the left amygdala (p’s≤0.05 adjusted), which were correlated with increases in generativity (p’s =0.06). Meaningful social engagement buffered amygdalar declines important to preservation of emotionally salient memory and risk for dementia. Part of a symposium sponsored by Brain Interest Group.

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Abstract MP16: Excessive White Matter Hyperintensity Burden and Functional Outcomes After Acute Ischemic Stroke

Stroke ◽

10.1161/str.52.suppl_1.mp16 ◽

2021 ◽

Vol 52 (Suppl_1) ◽

Author(s):

Sungmin Hong ◽

Anne-katrin Giese ◽

Markus D Schirmer ◽

Adrian V Dalca ◽

Anna Bonkhoff ◽

...

Keyword(s):

Ischemic Stroke ◽

White Matter ◽

Acute Ischemic Stroke ◽

Functional Outcomes ◽

Life Time ◽

Stroke Recovery ◽

White Matter Hyperintensity ◽

Brain Health ◽

Stroke Outcomes ◽

The Brain

Objective: Ability of the brain to recover after an acute ischemic stroke (AIS) is linked to the pre-stroke burden of white matter hyperintensity (WMH), a radiographic marker of brain health. We sought to determine the excessive WMH burden in an AIS population and investigate its association with 3-month stroke outcomes. Data: We used 2,435 subjects from the MRI-GENIE study. Three-month functional outcomes of 872 subjects among those subjects were measured by 90-day modified Ranking Scale (mRS). Methods: We automatically quantified WMH volume (WMHv) on FLAIR images and adjusted for a brain volume. We modeled a trend using the factor analysis (FA) log-linear regression using age, sex, atrial fibrillation, diabetes, hypertension, coronary artery disease and smoking as input variables. We categorized three WMH burden groups based on the conditional probability given by the model (LOW: lower 33%, MED: middle 34%, and HIGH: upper 33%). The subgroups were compared with respect to mRS (median and dichotomized odds ratio (OR) (good/poor: mRS 0-2/3-6)). Results: Five FA components out of seven with significant relationship to WMHv (p<0.001) were used for the regression modeling (R 2 =0.359). The HIGH group showed higher median (median=2, IQR=2) mRS score than LOW (median=1, IQR=1) and MED (median=1, IQR=1). The odds (OR) of good AIS outcome for LOW and MED were 1.8 (p=0.0001) and 1.6 (p=0.006) times higher than HIGH, respectively. Conclusion: Once accounted for clinical covariates, the excessive WMHv was associated with worse 3-month stroke outcomes. These data suggest that a life-time of injury to the white matter reflected in WMH is an important factor for stroke recovery and an indicator of the brain health.

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The Brain Metastases Symptom Checklist as a novel tool for symptom measurement in patients with brain metastases undergoing whole-brain radiotherapy

Current Oncology ◽

10.3747/co.23.2936 ◽

2016 ◽

Vol 23 (3) ◽

pp. 239 ◽

Cited By ~ 5

Author(s):

D. Rodin ◽

B. Banihashemi ◽

L. Wang ◽

A. Lau ◽

S. Harris ◽

...

Keyword(s):

Brain Metastases ◽

Intraclass Correlation ◽

Whole Brain Radiotherapy ◽

Assessment Tools ◽

Symptom Checklist ◽

Retest Reliability ◽

Brain Radiotherapy ◽

Test Retest Reliability ◽

The Brain ◽

Responsiveness To Change

Purpose We evaluated the feasibility, reliability, and validity of the Brain Metastases Symptom Checklist (BMSC), a novel self-report measure of common symptoms experienced by patients with brain metastases.Methods Patients with first-presentation symptomatic brain metastases (n = 137) referred for whole-brain radiotherapy (WBRT) completed the BMSC at time points before and after treatment. Their caregivers (n = 48) provided proxy ratings twice on the day of consultation to assess reliability, and at week 4 after WBRT to assess responsiveness to change. Correlations with 4 other validated assessment tools were evaluated.Results The symptoms reported on the BMSC were largely mild to moderate, with tiredness (71%) and difficulties with balance (61%) reported most commonly at baseline. Test–retest reliability for individual symptoms had a median intraclass correlation of 0.59 (range: 0.23–0.85). Caregiver proxy and patient responses had a median intraclass correlation of 0.52. Correlation of absolute scores on the BMSC and other symptom assessment tools was low, but consistency in the direction of symptom change was observed. At week 4, change in symptoms was variable, with improvements in weight gain and sleep of 42% and 41% respectively, and worsening of tiredness and drowsiness of 62% and 59% respectively.Conclusions The BMSC captures a wide range of symptoms experienced by patients with brain metastases, and it is sensitive to change. It demonstrated adequate test–retest reliability and face validity in terms of its responsiveness to change. Future research is needed to determine whether modifications to the BMSC itself or correlation with more symptom-specific measures will enhance validity.

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The Rationale for Monitoring Cognitive Function in Multiple Sclerosis: Practical Issues for Clinicians

The Open Neurology Journal ◽

10.2174/1874205x01812010031 ◽

2018 ◽

Vol 12 (1) ◽

pp. 31-40 ◽

Cited By ~ 8

Author(s):

Christos Bakirtzis ◽

Panagiotis Ioannidis ◽

Lambros Messinis ◽

Grigorios Nasios ◽

Elina Konstantinopoulou ◽

...

Keyword(s):

Multiple Sclerosis ◽

Clinical Practice ◽

Cognitive Function ◽

Cognitive Rehabilitation ◽

Assessment Tools ◽

Systematic Evaluation ◽

Presenting Symptoms ◽

Increased Risk ◽

Medication Side ◽

Multiple Sclerosis Patients

About half of patients with multiple sclerosis exhibit cognitive impairment which negatively affects their quality of life. The assessment of cognitive function in routine clinical practice is still undervalued, although various tools have been proposed for this reason. In this article, we describe the potential benefits of implementing cognitive assessment tools in routine follow -ups of MS patients. Early detection of changes in cognitive performance may provide evidence of disease activity, could unmask depression or medication side-effects and provide suitable candidates for cognitive rehabilitation. Since apathy and cognitive deficiencies are common presenting symptoms in Progressive Multifocal Leukoencephalopathy, we discuss the utility of frequent monitoring of mental status in multiple sclerosis patients at increased risk. In addition, we propose a relevant algorithm aiming to incorporate a systematic evaluation of cognitive function in every day clinical practice in multiple sclerosis.

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Big data to smart data in Alzheimer's disease: The brain health modeling initiative to foster actionable knowledge

Alzheimer s & Dementia ◽

10.1016/j.jalz.2016.04.008 ◽

2016 ◽

Vol 12 (9) ◽

pp. 1014-1021 ◽

Cited By ~ 41

Author(s):

Hugo Geerts ◽

Penny A. Dacks ◽

Viswanath Devanarayan ◽

Magali Haas ◽

Zaven S. Khachaturian ◽

...

Keyword(s):

Alzheimer’S Disease ◽

Alzheimer's Disease ◽

Big Data ◽

Brain Health ◽

Actionable Knowledge ◽

Smart Data ◽

The Brain

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REV-ERBα mediates complement expression and diurnal regulation of microglial synaptic phagocytosis

eLife ◽

10.7554/elife.58765 ◽

2020 ◽

Vol 9 ◽

Author(s):

Percy Griffin ◽

Patrick W Sheehan ◽

Julie M Dimitry ◽

Chun Guo ◽

Michael F Kanan ◽

...

Keyword(s):

Daily Variation ◽

Brain Health ◽

Astrocyte Activation ◽

Synaptic Regulation ◽

Microglial Phagocytosis ◽

Synapse Loss ◽

The Brain ◽

Master Clock ◽

Clock Protein ◽

Diurnal Regulation

The circadian clock regulates various aspects of brain health including microglial and astrocyte activation. Here, we report that deletion of the master clock protein BMAL1 in mice robustly increases expression of complement genes, including C4b and C3, in the hippocampus. BMAL1 regulates expression of the transcriptional repressor REV-ERBα, and deletion of REV-ERBα causes increased expression of C4b transcript in neurons and astrocytes as well as C3 protein primarily in astrocytes. REV-ERBα deletion increased microglial phagocytosis of synapses and synapse loss in the CA3 region of the hippocampus. Finally, we observed diurnal variation in the degree of microglial synaptic phagocytosis which was antiphase to REV-ERBα expression. This daily variation in microglial synaptic phagocytosis was abrogated by global REV-ERBα deletion, which caused persistently elevated synaptic phagocytosis. This work uncovers the BMAL1-REV-ERBα axis as a regulator of complement expression and synaptic phagocytosis in the brain, linking circadian proteins to synaptic regulation.

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How Returning Aggregate Research Results Impacts Interest in Research Engagement and Planned Actions Relevant to Health Care Decision Making: Cohort Study (Preprint)

10.2196/preprints.10647 ◽

2018 ◽

Author(s):

Elissa R Weitzman ◽

Kara M Magane ◽

Lauren E Wisk

Keyword(s):

Information Seeking ◽

Research Participation ◽

Future Research ◽

Patient Centered ◽

Research Results ◽

Research Engagement ◽

Patient Reported ◽

Virtuous Cycle ◽

Interest In Research ◽

Reaction Patterns

BACKGROUND Collection of patient-reported outcomes measures (PROs) may augment clinical data and inform health research, improving care, yet approaches to sustaining interest among patient cohorts in research participation are needed. One approach may involve returning aggregate research results (ARRs), which may help patients contextualize personal experiences, prompt conversations with providers or family, and encourage information seeking. This model has been demonstrated for Web-based patient-centered registries. Studies with clinical cohorts may further elucidate the model, its impacts on interest in research participation and planned actions, and potential for participants to experience this as helpful or harmful—gap areas. OBJECTIVE We sought to investigate the impacts of returning ARRs comprising summaries of PROs and clinical metrics to parents of children with rheumatic disease, assessing interest in future research participation among parents who viewed ARRs and plans for acting on returned information. Further, we sought to investigate reactions to viewing ARRs and how these reactions impacted planned actions. METHODS Clinical and PRO data were obtained about children in a national clinical disease registry, summarized, and processed into annotated infographics, comprising ARRs for children’s parents. Parents who viewed ARRs (n=111) were surveyed about the information’s perceived value and their reactions. Reaction patterns were summarized using principal components analysis (PCA), and associations among reaction patterns and interest in research participation and planned actions were estimated using multivariate logistic regression. RESULTS Parental endorsement of the value of ARRs for understanding their child’s condition and making care decisions was high (across 10 topics for which ARRs were shared, 42.2%-77.3% of the parents reported information was “very valuable”). Most (58/111, 52.3%) parents reported being more interested in participating in research after viewing ARRs, with the remainder reporting that their interest levels were unchanged. Reactions to viewing ARRs reflected experiencing validation/affirmation and information burden based on PCA. Reactions were not associated with child demographic or clinical characteristics and PROs, except that parents from households with less education reported greater information burden than those from more educated households (P=.007). In adjusted models, parents with higher validation/affirmation scores had increased odds of reporting heightened interest in research participation (adjusted odds ratio [AOR] 1.97, 95% CI 1.18-3.30), while higher information burden scores were associated with decreased odds of planned discussions with their child (AOR 0.59, 95% CI 0.36-0.95) and increased odds of planned discussions with providers (AOR 1.75, 95% CI 1.02-3.00). CONCLUSIONS Returning ARRs may foster a “virtuous cycle” of research engagement, especially where ARRs are experienced favorably and affect plans to share and discuss ARRs in support of a child’s chronic disease care and treatment. Reactions to ARRs vary with education level, underscoring the need for attention to equity for this model.

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