March 1, 2025
Uncategorized
Improving Advance Care Planning for Seriously Ill Primary Care Patients: UC Health Care Planning Study
January 2025 - In Grand Rounds 52, Rebecca Sudore, MD, and Anne Walling, MD, PhD, present on "Improving Advance Care Planning (ACP) for Seriously Ill Primary Care Patients: UC Health Care Planning Study". They discuss the evolving ACP definition and research, along with lessons learned from their ACP PCORI pragmatic randomized control trial.
Speakers
Rebecca Sudore, MD
Professor of Medicine,
University of California,
San Francisco
Anne Walling, MD, PhD
Professor-in-Residence,
University of California,
Los Angeles
Learning Objectives
- The Evolving ACP Definition & Research
- Lessons for an ACP PCORI Pragmatic RCT
- Identifying the cohort with validated algorithms
- Constructing the ACP EMR Intervention Infrastructure
- Healthcare navigator arm
- Trial outcomes: NLP
- Implementation Lessons
Guidance for Proxy Data and Dyadic Analysis
May 17, 2024
Authors: Katie Newkirk, PhD and Joan Monin, PhD
Description: This document provides guidance on what dyadic data is, how it is different from proxy data, and what information can be gained by collecting and analyzing dyadic data compared to proxy data when conducting embedded pragmatic clinical trials (ePCTs) that include people living with dementia and care partners. Topic covered:
- Dyadic Data
- Proxy Data
- Constructs Often Measured for Both People Living with Dementia and Care Partners
- Analyzing Dyadic Data
- When Data Don’t Require Dyadic Analysis
- Proxy Data
- Do I Have Dyadic Data?
Citation: Newkirk K, Monin J. Guidance for Proxy Data and Dyadic Analysis. NIA IMPACT Collaboratory; 2024. doi: 10.58234/236781742
Click to view PDF of Guidance for Proxy Data and Dyadic Analysis
Observing the impact of personalized music on agitated behaviors in dementia patients
November 2, 2023
Authors, including IMPACT members, Roee Gutman, PhD, Vincent Mor, PhD, James Rudolph, MD, SM, Rosa Baier, MPH, and Ellen McCreedy, PhD, MPH explored whether implementation of a personalized music intervention decreased the frequency of agitated behaviors in nursing home residents with dementia. They measured impact by using structured observations conducted as part of a randomized controlled trial design.
The authors found that personalized music decreased the frequency of verbally agitated behaviors in residents randomized to receive the treatment compared to residents randomized to a usual care control. No effect of the intervention was found on physically agitated behaviors. The intervention also increased observed pleasure.
This study provides evidence for the effectiveness of a non-pharmacological intervention for temporary relief in verbal behaviors in nursing home residents with dementia.
American Journal of Bioethics publishes special issue, includes commentary on article by IMPACT member
July 14, 2023
A previously published article by IMPACT member Emily Largent, PhD, JD, RN, and Stephanie Morain, MD, was the subject of guest commentary in a special issue of The American Journal of Bioethics (AJOB). The special issue focused on pragmatic clinical trials (PCTs). In the issue, Largent and Morain’s target article exploring investigators’ ethical obligations to patients was discussed in several peer commentaries and by two guest editorials including one co-authored by Commissioner of the Food and Drug Administration (FDA), Robert Califf, MD.
Access the special issue including all commentaries and the original target article.
IMPACT Collaboratory announces the 2023 Health Care Systems Scholars Program Awardees
The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer’s Disease (AD) and AD-Related Dementias (AD/ADRD) Clinical Trials (IMPACT) Collaboratory (U54AG063546) is pleased to announce the 2023 Health Care Systems (HCS) Scholars Program awardees.
This program offers investigators an opportunity to work directly with health care systems interested in improving the care provided to people living with dementia (PLWD) and their care partners. The goals of the HCS Scholars Program are to embed investigators in health care systems to:
- Establish mutually beneficial partnerships to improve the care of PLWD and their care partners.
- Train investigators about health care settings’ needs and how new programs are successfully introduced at all levels of the organization.
- Engage HCS in learning more about what it means to conduct ePCTs and provide resources for understanding opportunities for improvement in dementia care or evaluation of related quality improvement projects.
- Strengthen collaborations between investigators and HCS that may lead to pilot studies or demonstration projects.
Recipients of this year’s HCS Scholar awards are:
Co-Designing Care Transition Support for Dementia Patients and Care Partners
Building an Academic Long-Term Care System Coalition to Improve Palliative Care
IMPACT’s Mor is among authors of JAMA article on hospital discharge rates and nursing home quality for those with dementia
IMPACT multiple principal investigator Vincent Mor, PhD recently co-authored an article in Journal of American Medical Association (JAMA) Network Open sharing results of a cross-sectional analysis of Medicare beneficiaries.
The JAMA Network Open article shares a cross-sectional analysis of more than 2 million Medicare beneficiaries hospitalized between 2017 and 2019. The analysis revealed that persons with Alzheimer’s Disease and Related Dementia were more likely to be discharged to lower-quality Skilled Nursing Facilities (SNF) after accounting for discharging hospital, residential neighborhood, and other characteristics (e.g., post-acute care specialization) of all SNFs available at discharge. Results were consistent in analyses stratified by race and ethnicity, payer source, and primary diagnosis.
The article was also covered in McKnight’s to emphasize how the study results show that regulatory and payment changes are “badly needed” to improve the care process and support direct care staff working with dementia patients.
The McKnight article emphasized how the results should cause policymakers to consider incentivizing nursing homes to take patients with Alzheimer’s disease and related dementias (ADRD). The study data showed that these patients often end up in low-quality facilities after a hospital stay. Mor and his colleagues suggested that improving nursing home quality for patients with ADRD will require focused funding efforts to provide quality care.
IMPACT to host webinar to introduce the Long Term Care Data Cooperative
The IMPACT Collaboratory will host a special webinar event featuring leaders from the Long-Term Care (LTC) Data Cooperative, who will provide an introduction and overview to this powerful new resource. The webinar will be December 7 from 12:00 pm- 1:00 pm EST and will feature IMPACT’s Vince Mor, PhD, David Dore, PharmD, PhD, from Exponent, and David Gifford, MD, MPH from the American Health Care Association (AHCA). Participants will learn more about the Data Cooperative, its membership, how to join, and options for data access.
The LTC Data Cooperative is a nationwide effort funded by the National Institute on Aging, to assemble resident health records to improve treatment outcomes and be better prepared for public health events in the future. An outgrowth of work led by Vince Mor in response to COVID-19, this initiative brings together healthcare systems and data management resources to create the largest integrated database of detailed, normalized, electronic health record (EHR) data from nursing homes (NH) in the United States. The EHR data can also be linked to Medicare claims data.
The LTC Data Cooperative will:
- Assist providers with health care operations, including care coordination, risk stratification and quality performance reporting.
- Support public health monitoring for medical conditions and infections, including COVID-19.
- Enable observational studies of the LTC population, ranging from comparative treatment effectiveness studies, to epidemiological studies of risk to pharmaco-epidemiological studies.
- Facilitate provider and patient recruitment into clinical research studies, including stage 3 and 4 embedded pragmatic clinical trials.
The LTC Data Cooperative’s comprehensive data set will facilitate researchers’ ability to test the impact of treatments and other interventions intended to improve the lives of NH residents through observational studies and pragmatic clinical trials. This will enable researchers to generate real-world evidence on the effectiveness of different treatments and care practices for older adults, individuals with disabilities, and people living with dementia in nursing homes.
Registration closed.
Jennifer Carnahan, MD, MPH, MA
Indiana University School of Medicine
Embedded Clinical Trial of Patient Priorities Care among Persons Living with Mild Cognitive Impairment and Dementia
Health Care Systems
- Eskenazi Health
- Indiana University Health
- University of Texas
Dr. Carnahan is a geriatrician, an assistant professor of medicine at Indiana University School of Medicine, and a researcher at the Indiana University Center for Aging Research at Regenstrief Institute. She practices primary care geriatrics at the Eskenazi Center for Senior Health and the Roudebush VA Medical Center, where she is a member of the GeriPACT and the LGBTQ Healthcare PACT. She is the current recipient of a K23 career development award from the NIA that examines outcomes of transitions of care from the skilled nursing facility setting to home for persons living with Alzheimer’s disease and related dementias and their care partners.
RATIONALE: People living with dementia or mild cognitive impairment (PLWD/MCI) are a heterogeneous group with varying disease course trajectories and life expectancies. Because of this heterogeneity, PLWD/MCI often receive care that is inconsistent with their goals—often too aggressive but sometimes too conservative. Patient Priorities Care (PPC) helps patients and their care team to identify their health priorities and helps the health professionals to align care with these priorities.
OBJECTIVE: The objective of this pilot study for an embedded pragmatic clinical trial (ePCT) is to demonstrate the feasibility of identifying a diverse cohort of eligible PLWD/MCI – care partner dyads and implementing the PPC program by trained facilitators (e.g., social worker, nurse, or nursing assistant).
SETTING: Geriatrics and primary care clinics in three different health systems.
POPULATION: Community-dwelling PLWD/MCI and their care partners.
INTERVENTION: Clinical staff engage PLWD/MCI and their care team to identify their health priorities using PPC materials. This will be followed by alignment of patient priorities with their medical care plan in collaboration with their physician or advanced practice provider.
OUTCOMES: The primary clinical outcome is days at home. Secondary clinical outcomes are total medications and new referrals to specialists. Implementation endpoints (acceptability, appropriateness, feasibility, fidelity, and potential for future adoption of the intervention) will be assessed through chart review and semi-structured exit interviews with some dyads and clinicians.
IMPACT: This pilot study will demonstrate the feasibility of both implementation of PCC and pragmatic data collection methods as well as establish the acceptability of the intervention to clinicians, PLWD/MCI and care partners in order to conduct a multi-site, embedded pragmatic clinical trial of PPC for PLWD/MCI.