Faculty Bibliography

OBJECTIVE:We sought to identify patterns in occupational therapy (OT) and physical therapy (PT) home health care visits among people living with dementia (PLWD) by (1) level of function care partner report compared with administrative data, (2) race and ethnicity, and (3) level of socioeconomic resources. DESIGN/METHODS:A secondary analysis. SETTING AND PARTICIPANTS/METHODS:We used data collected from 152 PLWD-care partner dyads enrolled in a hybrid type I effectiveness trial at a large, urban, Medicare-certified, nonprofit home health care agency in the northeastern United States. METHODS:Function was measured with the Caregiver Quality of Life Assistance in Activities of Daily Living (ADLs) and Assistance in Instrumental Activities of Daily Living (IADLs) subscales. PLWD's addresses were used to measure socioeconomic deprivation using the Area Deprivation Index (ADI). The number of OT/PT visits were calculated for the first 30 days of enrollment in the study with care partners' reports and administrative data. Visit data were compared and analyzed using a Wilcoxon signed-rank test and a zero-inflated negative binomial regression. Differences in the number of OT/PT visits was compared across racial and ethnic groups, ADI quartiles, and level of function using regression and controlling for education and comorbidities. RESULTS:Hispanic (mean: 1.4, SD: 0.754) and non-Hispanic Black (mean: 1.6, SD: 0.769) PLWD had significantly lower ADL function at baseline than White individuals (mean: 2.103, SD: 0.882) (P = .002) that increased over 30 days (P = .513). A significant difference existed between care partner and administrative reports in the number of PT visits (F = 0.97, P = .459) but not OT visits. There were no differences in OT/PT utilization based on race and ethnicity and socioeconomic resources. CONCLUSIONS AND IMPLICATIONS/CONCLUSIONS:Caregiver report was not reliable for PT visits received in home health care. OT/PT home health care utilization may help reduce disparities in ADL function across racial and ethnic groups.

Factorial study designs can be important for understanding the effectiveness of interventions when multiple interventions are under investigation. In this design setting, a unit of randomization can be assigned to any combination of interventions. The rationale for taking this kind of approach can vary depending on the specific questions targeted by the research. These questions, in turn, have implications for the way in which the analyses will be conducted. The goal in this paper is to describe how we developed a factorial design along with a Bayesian analytic plan for a large cluster-randomized trial-the Emergency Departments LEading the transformation of Alzheimer's and Dementia care (ED-LEAD) study-focused on improving care for persons living with dementia.

Assisted living (AL) and residential care (RC) settings are experiencing substantial growth as older adults with lower care needs seek alternatives to nursing homes. Despite this trend, there is a lack of skilled nursing care to support palliative care (PC) in these environments. Primary PC delivered by AL staff has emerged as a potential model to bridge this gap, focusing on symptom management and holistic support for individuals with serious illness. A metasynthesis of 88 qualitative studies was conducted to explore the provision of primary PC in AL/RC settings. The National Consensus Project Clinical Practice Guidelines for Quality Palliative Care was used to provide a holistic framework to identify unmet PC need and gaps in PC delivery. Studies published between 2012 and 2024 were analyzed to identify themes and categories related to PC domains, including physical, psychological, social, spiritual, cultural, end-of-life care, and ethical and legal considerations. Thematic synthesis revealed key findings across the identified PC domains within AL/RC settings. Studies highlighted challenges and opportunities for delivering primary PC in these environments, emphasizing the importance of addressing physical symptoms, psychological distress, social isolation, and spiritual needs among residents with serious illnesses. The metasynthesis underscores the critical role of primary PC in enhancing quality of life and care continuity for older adults residing in AL/RC settings. It also identifies gaps in current practices and emphasizes the need for tailored interventions and training to support care providers in delivering comprehensive PC to this population. By integrating qualitative research findings with the National Consensus Project guidelines, this metasynthesis provides a comprehensive overview of primary PC in AL/RC settings. The study underscores the necessity of enhancing PC delivery in these environments to meet the evolving needs of older adults with serious illnesses, thereby improving overall quality of care for residents with unmet palliative needs.

BACKGROUND:Despite the need, care partners of persons living with mild cognitive impairment (MCI) use supportive services less. The unique needs of care partners to persons living with MCI are not well described. This study explores how care partners support the inner strength of persons newly diagnosed with MCI. METHODS:Nine dyads of persons living with MCI and their care partners completed semi-structured interviews, analyzed according to the Listening Guide methodology. RESULTS:Care partners described supporting inner strengths of persons living with MCI by carrying the cognitive load and being reliable. Reconceptualizing identity was foundational. Across themes, care partners needed simultaneous support for themselves. DISCUSSION/CONCLUSIONS:This study represents the perspectives of a well-defined group of care partners to persons living with MCI. Eliciting the perspectives of underrepresented care partners and equitable access to MCI diagnosis are essential for future research. Dyadic supportive services tailored for MCI using a strengths-based approach are needed. HIGHLIGHTS/CONCLUSIONS:Care partners to persons living with mild cognitive impairment (MCI) are unique. Care partners support inner strength of persons living with MCI and need simultaneous support. Care partners reconceptualize their identities, are reliable, and carry cognitive load. Methods for eliciting perspectives of underrepresented care partners are needed. Supportive services tailored for MCI using a strengths-based approach are needed.

BACKGROUND AND OBJECTIVES/OBJECTIVE:Goal-concordant transition to hospice is an important facet of end-of-life care for people living with dementia. The objective of this integrative review was to appraise existing evidence and gaps focused on interventions and predictors of transition to hospice and end-of-life care for persons living with dementia across healthcare to inform future research. RESEARCH DESIGN AND METHODS/METHODS:Using integrative review methodology by Whittemore and Knafl, five databases were searched (PubMed, CINAHL, Web of Science, Google Scholar, Cochrane Database for Systematic Reviews) for articles between 2000 and 2023. The search focused on dementia, hospice care, transitions, care management and/or coordination, and intervention studies. RESULTS:Fourteen articles met inclusion criteria after critical appraisal. Most were cross-sectional in design and conducted in nursing homes and hospitals in the U.S. persons living with dementia had multiple chronic conditions including cancer, diabetes, heart disease, and stroke. Interventions included components of hospice decision-making delivered through advance care planning, checklist-based care management for hospice transition, and palliative care for those with severe dementia. Predictors included increasing severity of illness including functional decline, organ failure, intensive care use, and the receipt of palliative care. Other predictors were related to insurance status, race and ethnicity, and caregiver burden. Overall, despite moderate to high-quality evidence, the studies were limited in scope and sample and lacked racial and ethnic diversity. DISCUSSION AND IMPLICATIONS/CONCLUSIONS:Prospective, multisite randomized trials and population-based analyses including larger and diverse samples are needed for improved end-of-life dementia illness counseling and hospice care transitions for persons living with dementia and their caregivers.

BACKGROUND/UNASSIGNED:Chronic kidney disease (CKD) impacts more than 800 million people. It causes significant suffering and disproportionately impacts marginalized populations in the United States. Kidney palliative care has the potential to alleviate this distress, but has not been tested. This pilot study evaluates the feasibility of a randomized clinical trial (RCT) testing the efficacy of integrated kidney palliative and CKD care in an urban safety-net hospital. METHODS/UNASSIGNED:, and are receiving care at our safety net hospital. Participants will be randomized in permuted blocks of two or four to either the intervention group, who will receive monthly ambulatory care visits for six months with a palliative care provider trained in kidney palliative care, or to usual nephrology care. Primary outcomes are feasibility of recruitment, retention, fidelity to the study visit protocol, and the ability to collect outcome data. These outcomes include symptom burden, quality of life, and engagement in advance care planning. DISCUSSION/UNASSIGNED:This pilot RCT will provide essential data on the feasibility of testing integrated palliative care in CKD care in an underserved setting. These outcomes will inform a larger, fully powered trial that tests the efficacy of our kidney palliative care approach. CLINICAL TRIAL REGISTRATION/UNASSIGNED:NCT04998110.

CONTEXT/BACKGROUND:Chronic kidney disease (CKD) disproportionately impacts lower socioeconomic groups and is associated with many symptoms and complex decisions. Integration of Kidney Supportive Care (KSC) with CKD care can address these needs. To our knowledge, this approach has not been described in an underserved population. OBJECTIVES/OBJECTIVE:We describe our adaptation of an ambulatory integrated KSC and CKD clinic for implementation in a safety net hospital. We report our utilization metrics; characteristics of the population served; and visit activities. METHODS:We considered modifications from the perspectives of people with CKD, their providers, and the health system. Modifications were informed by meeting notes with key participants (hospital administrators [n = 5], funders [n = 1], and content experts [n = 2]), as well as literature on palliative care program building, safety net hospitals, and KSC. We extracted utilization data for the first 15 months of the clinic's operations, demographics, clinical characteristics, unmet health related social needs, and symptom burden, measured by the Integrated Palliative Outcome Scale-Renal (total Score, and sub-scores of physical, psychological, and practical impact of CKD) from the electronic health record. Results are reported using descriptive statistics. RESULTS:Adaptions were proactive and done by clinical and administrative leaders. Meetings identified challenges of the safety net setting including people presenting with advanced disease and having several social needs. Modifications to our base model were made in staffing, data collection, and work flow. Show rate was approximately 68%, with a majority of people identifying as Black or Hispanic, and uninsured or on Medicaid. Symptom burden was lower than previous reports, driven by a better psychological sub-score. CONCLUSIONS:We describe a feasible ambulatory care model of KSC in a safety net setting that can serve as a framework for the development of other noncancer palliative care ambulatory clinics. Future work will optimize our model.

OBJECTIVES/OBJECTIVE:Home health care (HHC) plays a pivotal role in serving millions of US adults aging in place. Although the HHC population is growing rapidly in both size and diversity, driven by an aging US population and a changing demographic profile, there are increasing concerns of equity in HHC, particularly regarding how vulnerable populations are affected under current HHC practices. The purpose of this study was to examine the variations in accessing high-quality HHC in racial and ethnic minority groups and persons living with dementia. DESIGN/METHODS:Cross-sectional, secondary analysis. SETTING AND PARTICIPANTS/METHODS:Older adults who received HHC in 2016 from agencies with a star rating of overall care quality from the Home Health Compare program. METHODS:Start of care data from the 2016 HHC Outcome and Assessment Information Set was linked to Master Beneficiary Summary File, Home Health Compare, and Provider of Services file to address the aim. Multinomial regressions were used in analysis when risk-adjusting for individual and agency characteristics. RESULTS:Our risk-adjusted estimates, based on data from 574,682 older adults ≥65 years of age served by 8634 HHC agencies nationwide (2290 offering high-quality care, 4023 providing moderate-quality care, and 2321 delivering low-quality care), revealed significant disparities. Non-Hispanic Blacks (relative risk ratio, 0.62; 95% CI, 0.61-0.64) and Hispanics (relative risk ratio, 0.72; 95% CI, 0.70-0.74) were significantly less likely to receive care from high-quality agencies. Additionally, having dementia exacerbated disparities in accessing high-quality HHC between racial and ethnic minorities and White Americans. CONCLUSIONS AND IMPLICATIONS/CONCLUSIONS:Racial and ethnic minority individuals face significant disadvantages in accessing high-quality HHC, with persons living with dementia from these groups being the most disadvantaged. Further research is warranted to investigate the referral and admission processes for HHC. Our findings highlight the need for actions from clinicians and policymakers to tackle potential biases in the aforementioned care processes.