Publications

 

  
  
Core/Team
  
Description
Pharmacist-Led Telehealth Deprescribing for People Living with Dementia and Polypharmacy in Primary Care: A Pilot Study3/15/2024Funded Investigator
(Article) This paper presents the results on a pilot study of a pharmacist-led intervention to optimize medications with patient-care partner priorities. If scalable, such interventions may optimize goal-concordant care for PLWD.
The NIA IMPACT Collaboratory: history, impact, challenges, and the future of conducting ePCTs to improve dementia care2/16/2024Leadership Team
(Article) In recognition of the 50th anniversary of the National Institute on Aging (NIA), the authors commemorate the NIA’s response to the charge from Congress to identify effective and comprehensive programs to meet the urgent and complex public health needs of Americans impacted by Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD), a group of irreversible and progressive brain disorders that destroy a person’s memory and thinking skills.
Development and Validity of Norms for Cognitive Dispersion on the Uniform Data Set 3.0 Neuropsychological Battery2/13/2024Funded Investigator
(Article) This study aimed to develop and evaluate normed scores for cognitive dispersion among older adults. Investigators analyzed data from 4,283 cognitively normal participants aged ≥50 years from the Uniform Data Set (UDS) 3.0.  Results of this study provide evidence for the clinical utility of sample-based and demographically adjusted normative standards for cognitive dispersion on the UDS 3.0. These standards can be used to guide interpretation of intraindividual variability among older adults in clinical and research settings.
Care Fragmentation, Care Continuity, and Care Coordination—How They Differ and Why It Matters1/29/2024Funded Investigator
(Article) In this Viewpoint piece, the authors examine care fragmentation and propose conceptualizing fragmentation as a pattern of health care utilization that could cause harm and that is related to (but distinct from) care continuity and care coordination. They consider why fragmentation occurs and suggest a potential path forward for developing evidenced-based strategies that can reduce the occurrence of fragmentation and its associated harms.
Mapping racial and ethnic healthcare disparities for persons living with dementia: A scoping review1/24/2024Health Equity Team
(Article) Authors conducted a scoping review of literature published from 2000-2022 to assess evidence of disparities in Alzheimer's disease and Alzheimer's disease related dementias healthcare, including issues of access, quality, and outcomes for racial/ethnic minoritized persons living with dementia (PLWD) and family caregivers.
Algorithmic Identification of Persons with Dementia for Research Recruitment: Ethical Considerations1/10/2024Ethics and Regulation Core
(Article) This paper explains six ethical issues associated with the use of algorithms to identify patients living with dementia using information that is associated with this condition.  The authors describe concerns such as the generation of new, sensitive, identifiable medical information for research purposes without participant consent, issues of justice and equity, risk, and ethical communication. the article concludes with a discussion of strategies for addressing these issues and prompting valuable research.
The Case for Conducting Pragmatic Dementia Trials in Medicaid Home and Community-Based Service Settings12/23/2023Implementation Core
(Article) The authors make the case for the importance of Medicaid-funded home and community-based services (HCBSs) as dementia care ePCT partners because of the volume of vulnerable clients with dementia served and the potential positive impacts that evidence-based dementia care programs can have on clients and their informal caregivers.
Partnering with Social Service Staff to Implement Pragmatic Clinical Trials: An Interim Analysis of Implementation Strategies11/17/2023Training Core
(Article) Active partnerships with staff members are often critical to pragmatic trial implementation, but rarely do research teams track and evaluate the specific “implementation strategies” used to support staff’s involvement in trial procedures.  In response to this gap, investigators adapted implementation science methodologies and conducted an interim analysis of the strategies deployed with social service staff involved in one multi-site pragmatic clinical trial.
Selecting outcomes for pragmatic clinical trials in dementia care: the IMPACT Collaboratory Outcomes Library11/2/2023Patient and Caregiver Relevant Outcomes Core
(Article) Many interventions improve care and outcomes for people with Alzheimer's Disease and related dementias (ADRD), yet are never disseminated. Pragmatic trials facilitate the adoption and dissemination of best practices, but gaps in pragmatic outcome measurement are a critical obstacle. In this article, the authors aim to describe the development and structure of the IMbedded Pragmatic ADRD Clinical Trials Collaboratory iLibrary of potential outcome measures for ADRD pragmatic trials, and to assess their pragmatic characteristics.
Data Resource Profile: COVid VAXines Effects on the Aged (COVVAXAGE)10/11/2023Funded Investigator
(Article) To improve the assessment of COVID-19 vaccine use, safety, and effectiveness in older adults and persons with complex multimorbidity, the COVid VAXines Effects on the Aged (COVVAXAGE) database was established by linking CVS Health and Walgreens pharmacy customers to Medicare claims.
Development of a Lived Experience Panel to inform the design of embedded pragmatic trials of dementia care interventions10/10/2023Stakeholder Engagement Team; Health Equity Team
(Article) This paper describes the process and experience of recruiting, selecting and convening the IMPACT Lived Experience Panel (LEP) to inform the development of research priorities and provide input about conducting embedded pragmatic clinical trials (ePCTs) of dementia care interventions.
Sample size requirements to test subgroup-specific treatment effects in cluster randomized trials10/10/2023Design and Statistics Core
(Article) In this paper, the authors develop formal methods for sample size and power analyses for testing subgroup-specific treatment effects in parallel-arm CRTs with a continuous outcome and a binary subgroup variable. The variances of the subgroup-specific treatment effect estimators and their covariance are given by weighted averages of the variance of the overall average treatment effect estimator and the variance of the heterogeneous treatment effect estimator. This analytical insight facilitates an explicit characterization of the requirements for both the omnibus test and the intersection-union test to achieve the desired level of power.
Frontiers in antimicrobial stewardship: antimicrobial use during end-of-life care10/2/2023Funded Investigator
(Article) While considerable literature has accumulated regarding antimicrobial stewardship across the continuum of care, antimicrobial stewardship during end-of-life care is unique because its principles are employed in the context of palliative care. Understanding how antimicrobials facilitate palliative care – with its focus on management of symptoms, psychosocial support, and assistance with decision-making – offers new opportunities to optimize the reach and effectiveness of antimicrobial stewardship.
“Caregiving is teamwork…” Information sharing in home care for older adults with disabilities living in the community10/1/2023Funded Investigator
(Article) In this paper, authors examine information sharing between direct care workers, family caregivers, and clinicians involved in the care of older adults with disabilities.
Career Development in Pragmatic Clinical Trials to Improve Care for People Living with Dementia9/21/2023Training Core
(Article) This report describes the Career Development Program developed and supported by the NIA IMPACT Collaboratory with support from the NIA. It describes the unique career development challenges faced by early-career researchers involved in ePCTs for dementia care. Topics addressed include challenges in establishing a laboratory, academic promotion, mentoring and professional development, and work-life balance. Concrete suggestions to address these challenges are offered for early-career investigators, their mentors, and their supporting institutions.
Early Career Development in Pragmatic Clinical Trials Research to Improve Care for People Living with Dementia9/21/2023Training Core
(Article) This report presents challenges faced by early career researchers involved in the conduct of embedded pragmatic clinical trials for people with dementia and steps to overcome these challenges.
Ascertainment and Statistical Issues for Randomized Trials of Cardiovascular Interventions for Cognitive Impairment and Dementia9/21/2023Design and Statistics Core
(Article) Recently, some randomized trials have suggested that improvements in cardiovascular risk factors may also slow cognitive decline and reduce the eventual development of dementia. Unfortunately, the randomized trial template used achieve these results faces several design and analytic obstacles when applied in the context of cognitive decline and dementia. In this article, authors review these obstacles, motived by SPRINT (Systolic Blood Pressure Intervention Trial) and the context of selecting an appropriate cognitive end point for future preventative randomized trials.
Patient and Public Involvement in Pragmatic Trials: Descriptive Survey of Trialists9/11/2023Design and Statistics Core
(Article) There are few data on patient and public involvement (PPI) in pragmatic trials (including methods and outcomes). The author's objectives were to describe the prevalence and nature of PPI within pragmatic trials; describe variation in the prevalence of PPI across trial characteristics; and compare the prevalence of PPI reported by trial authors to that reported in primary trial publications.
Preliminary Evidence for Dementia Collaborative Coaching9/11/2023Funded Investigator
(Article) The primary purpose of this study was to obtain preliminary evidence for a communication coaching intervention, Dementia Collaborative Coaching. The secondary aim of this study was to assess the acceptability, appropriateness, and feasibility of the intervention according to routine care providers.
Preparing for Pragmatic Trials in Dementia Care: Health Equity Considerations9/1/2023Health Equity Team; Implementation Core
(Article) Authors present health equity considerations, case examples, and research strategies across ePCT study domains of evidence, risk and alignment. Future discussions regarding health equity considerations across other domains are needed.
Using Hybrid Effectiveness Studies to Facilitate Implementation in Community-Based Settings: Three Case Studies in Dementia Care Research8/26/2023Implementation Core
(Article) Authors describe hybrid effectiveness designs and show their application by providing three case examples of studies in dementia care conducted in different care settings. They offer considerations related to study design, sampling, data collection, and analysis to illustrate the three hybrid types that may guide gerontologists who aspire to adopt these designs in their own work. Study designs that focus on outcomes and implementation processes simultaneously may result in a truncated and more efficient implementation pipeline in gerontological research, thereby providing older persons, their families, healthcare providers, and communities with the best evidence to improve quality of life and care more rapidly.
The needs of family caregivers of persons living with dementia cared for in primary care practices8/18/2023Funded Investigator
(Article) The informal caregivers who provide unpaid support for PLWD are often unprepared to appropriately manage symptoms and navigate health services to support themselves or the PLWD. The authors aims to understand informal caregivers' perceived capabilities of handling dementia symptomology and perceived support from providers.
Racial and ethnic disparities in COVID-19 booster vaccination among U.S. older adults differ by geographic region and Medicare enrollment8/10/2023Funded Investigator
(Article) COVID-19 booster vaccines are highly effective at reducing severe illness and death from COVID-19. Research is needed to identify whether racial and ethnic disparities observed for the primary series of the COVID-19 vaccines persist for booster vaccinations and how those disparities may vary by other characteristics. The authors of this article aimed to measure racial and ethnic differences in booster vaccine receipt among U.S. Medicare beneficiaries and characterize potential variation by demographic characteristics.
Comparative Risks of Potential Adverse Events Following COVID-19 mRNA Vaccination Among Older US Adults8/2/2023Funded Investigator
(Article) Authors conducted a head-to-head comparison of the mRNA vaccines for COVID-19 in older US adults. They found that the vaccine produced by Moderna was more effective and associated with fewer adverse events, possibly due to its improved protection against SARS-CoV-2.
Evaluating the pragmatic characteristics of advance care planning outcome measures in dementia clinical trials: A scoping review7/13/2023Patient and Caregiver Relevant Outcomes Core
(Article) A scoping review of outcome measures utilized in ACP randomized controlled clinical trials (RCTs) enrolling PLWD or their care partners. Authors also evaluate the pragmatic characteristics of these outcome measures.
Dementia and electronic health record phenotypes: a scoping review of available phenotypes and opportunities for future research7/7/2023Patient and Caregiver Relevant Outcomes Core; Technical Data Core
(Article) Authors performed a scoping review of algorithms using electronic health record (EHR) data to identify patients with Alzheimer’s disease and related dementias (ADRD), to advance their use in research and clinical care.
Protecting seriously ill populations during pragmatic clinical trials7/3/2023Patient and Caregiver Relevant Outcomes Core
(Article) Pragmatic clinical trials (PCTs) emphasize real-world effectiveness methodology to address the limitations of results from explanatory randomized clinical trials (RCTs), which often fail to translate to real-world medical practice. An inherent tension in the conduct of PCTs is that the research must impose a minimal burden on patients and health care institutions, but a lack of patient-reported outcomes may result in gaps in safety for vulnerable populations, such as those with serious illnesses. In this article, the authors make the case for a risk-based approach to imposing additional data collection in PCTs to capture potential safety and patient experience outcomes, using examples from "real life" implemented interventions to improve end-of-life care through the Liverpool Pathway and through the implementation of Physician Orders for Life Sustaining Treatment (POLST) in Oregon.
Clinical reasoning in pragmatic trial randomization: a qualitative interview study6/27/2023Ethics and Regulation Core
(Article) Pragmatic trials, because they study widely used treatments in settings of routine practice, require intensive participation from clinicians who determine whether patients can be enrolled. Clinicians are often conflicted between their therapeutic obligation to patients and their willingness to enroll them in trials in which treatments are randomly determined and thus potentially suboptimal. Refusal to enroll eligible patients can hinder trial completion and damage generalizability. In order to help evaluate and mitigate clinician refusal, this qualitative study examined how clinicians reason about whether to randomize eligible patients.
Emergency Department-to-Community Transitions of Care: Best Practices for the Older Adult Population6/14/2023Funded Investigator
(Article) This paper describes emergency department (ED)-to-community care transitions for older adults and associated challenges, measurement, proven efficacious and effective interventions, and policy considerations.
A call to address structural barriers to Hispanic/Latino representation in clinical trials on Alzheimer's disease and related dementias: A micro‐meso‐macro perspective6/5/2023Health Equity Team
(Article) This perspective paper addresses the US Hispanic/Latino experience of underrepresentation in Alzheimer's disease and related dementias (AD/ADRD) clinical trials. Latino individuals are at increased risk for AD/ADRD, experience higher disease burden, and low receipt of care and services. The authors present a novel theoretical framework—the Micro‐Meso‐Macro Framework for Diversifying AD/ADRD Trial Recruitment—which considers multi‐level barriers and their impact on Latino trial recruitment.
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