Abraham A. Brody

Abstract

Context: Persons from underrepresented racial and ethnic groups experience disparities in access to and quality of palliative and end-of-life care. Objectives: To summarize and evaluate existing palliative and end-of-life care interventions that aim to improve outcomes for racial and ethnic underrepresented populations in the United States. Methods: We conducted a systematic review of the literature in the English language from four databases through January 2020. Peer-reviewed studies that implemented interventions on palliative care, advance care planning, or end-of-life care were considered eligible. Data were extracted from 16 articles using pre-specified inclusion and exclusion criteria. Quality was appraised using the modified Downs and Black tool for assessing risk of bias in quantitative studies. Results: Five studies were randomized controlled trials, and the remainder were quasi-experiments. Six studies targeted Latino/Hispanic Americans, five African Americans, and five, Asian or Pacific Islander Americans. The two randomized control trials reviewed and rated “very high” quality, found educational interventions to have significant positive effects on advance care planning and advance directive completion and engagement for underrepresented racial or ethnic groups. Conclusion: The effectiveness of advance care planning, end-of-life, and palliative care interventions in improving outcomes for underrepresented racial and ethnic populations remains uncertain. Randomized controlled trials and educational interventions indicate that interventions targeting underrepresented groups can have significant and positive effects on advance directives and/or advance care planning-related outcomes. More high-quality intervention studies that address racial and ethnic health disparities in palliative care are needed, particularly those that address systemic racism and other complex multilevel factors that influence disparities in health.

Abstract

Objectives: Individual-level social needs have been shown to substantially impact emergency department (ED) care transitions of older adults. The Geriatric Emergency care Applied Research (GEAR) Network aimed to identify care transition interventions, particularly addressing social needs, and prioritize future research questions. Methods: GEAR engaged 49 interdisciplinary stakeholders, derived clinical questions, and conducted searches of electronic databases to identify ED discharge care transition interventions in older adult populations. Informed by the Protocol for Responding to and Assessing Patients’ Assets, Risks, and Experiences (PRAPARE) framework, data extraction and synthesis of included studies included the degree that intervention components addressed social needs and their association with patient outcomes. GEAR convened a consensus conference to identify topics of highest priority for future care transitions research. Results: Our search identified 248 unique articles addressing care transition interventions in older adult populations. Of these, 17 individual care transition intervention studies were included in the current literature synthesis. Overall, common care transition interventions included coordination efforts, comprehensive geriatric assessments, discharge planning, and telephone or in-person follow-up. Fourteen of the 17 care transition intervention studies in older adults specifically addressed at least one social need within the PRAPARE framework, most commonly related to access to food, medicine, or health care. No care transition intervention addressing social needs in older adult populations consistently reduced subsequent health care utilization or other patient-centered outcomes. GEAR stakeholders identified that determining optimal outcome measures for ED–home transition interventions was the highest priority area for future care transitions research. Conclusions: ED care transition intervention studies in older adults frequently address at least one social need component and exhibit variation in the degree of success on a wide array of health care utilization outcomes.

Abstract

Objectives: Approximately 7.5 million US adults are homebound or have difficulty accessing office-based primary care. Home-based primary care (HBPC) provides such patients access to longitudinal medical care at home. The purpose of this study was to describe the challenges and adaptations by HBPC practices made during the first surge of the COVID-19 pandemic. Design: Mixed-methods national survey. Setting and Participants: HBPC practices identified as members of the American Academy of Homecare Medicine (AAHCM) or participants of Home-Centered Care Institute (HCCI) training programs. Methods: Online survey regarding practice responses to COVID-19 surges, COVID-19 testing, the use of telemedicine, practice challenges due to COVID-19, and adaptations to address these challenges. Descriptive statistics and t tests described frequency distributions of nominal and categorical data; qualitative content analysis was used to summarize responses to the open-ended questions. Results: Seventy-nine practices across 29 states were included in the final analyses. Eighty-five percent of practices continued to provide in-person care and nearly half cared for COVID-19 patients. Most practices pivoted to new use of video visits (76.3%). The most common challenges were as follows: patient lack of familiarity with telemedicine (81.9%), patient anxiety (77.8%), clinician anxiety (69.4%), technical difficulties reaching patients (66.7%), and supply shortages including masks, gown, and disinfecting materials (55.6%). Top adaptive strategies included using telemedicine (95.8%), reducing in-person visits (81.9%), providing resources for patients (52.8%), and staff training in PPE use and COVID testing (52.8%). Conclusions and Implications: HBPC practices experienced a wide array of COVID-19–related challenges. Most continued to see patients in the home, augmented visits with telemedicine and creatively adapted to the challenges. An increased recognition of the need for in-home care by health systems who observed its critical role in caring for fragile older adults may serve as a silver lining to the otherwise dark sky of the COVID-19 pandemic.

Abstract

Purpose: Telehealth’s uptake has increased substantially in recent years, with an especially large jump in 2020 due to the emergence of COVID-19. This article provides background on and explores “telepresence” in healthcare literature. Telepresence strongly impacts the patient experience, but it is poorly defined in current research. The aim was to conceptually define telepresence using qualitative methods. Design: Dimensional analysis was used to analyze telepresence in clinical literature and create a clearer definition of telepresence as a concept. Multiple databases were searched for articles related to telepresence. Thirteen international articles related to telepresence were selected for analysis. Methods: Dimensional analysis allowed for multiple viewpoints to be explored within each distinct context and perspective. Findings: Twenty-five dimensions were discovered within the articles, which were synthesized to seven core dimensions of telepresence: connection, technological mediation, experienced realism, trust, being supportive, collaboration, and emotional consequence. Conclusions: Telepresence is highly impactful on the patient’s experience of telehealth care visits. The conceptual map produced by this dimensional analysis provides direction for clinicians to improve their ability to be present with patients during telehealth care. Potential implications include a starting point for future qualitative research, and the use of this dimensional analysis to inform clinical guidelines, improve clinician training, and assist in the development of new care models. Clinical Relevance: A telepresence definition brings clarity to an ill-defined concept. COVID-19 magnifies the need for a better understanding of telepresence, which allows clinicians to improve telehealth encounters.

Abstract

Background: The COVID-19 pandemic has resulted in a profound transformation of health care delivery toward telemedicine models. Purpose: We present the structure of a nurse-led telephonic palliative program and operational metrics to influence further development of tele-palliative programs. Methods: The nurses engage with seriously ill patients for 6 months with the goal of discussing advance care planning (ACP) and addressing self-identified issues related to their illness. Findings: Of the first 100 program graduates, 78% were actively engaged and 51% named a health care agent and/or engaged in ACP. Of the 18 patients who died during the study, 13 (72%) were enrolled in hospice services. Discussion: Our preliminary results indicate that seriously ill patients are willing to engage with nurses and to participate with discussions on ACP. Conclusion: Given the gaps in health care exposed by the COVID-19 pandemic, this innovative program serves as an important model for bringing palliative care directly to patients.

Abstract

Homebound older adults are a highly vulnerable population, yet little is known about their experiences with healthcare during the COVID-19 pandemic. We interviewed patients in home-based primary care (HBPC) in New York City by telephone in May and June of 2020. Interviews covered social supports, household activities, self-care, and medical care, and asked participants to compare current with prepandemic experiences. Among 70 participants, 37% were Black and 32% were Hispanic. Disruptions in the home included greater difficulty accessing paid caregivers (13.9%) and food (35.3%) than before the pandemic, and unaddressed household chores (laundry, 81.4%; food preparation, 11.4%). Black study participants were more likely than White and Hispanic participants to report disruptions in accessing medical care (13 [50.0%] vs. 3 [14.3%] vs. 6 [27.3%], respectively, p = 0.02), as well as food preparation and medication taking. Black patients in HBPC are at risk of disparities in healthcare and social support during the COVID-19 pandemic.

Abstract

Background: Multiple sclerosis (MS) is an autoimmune disease leading to physical, emotional and cognitive disability. High body mass index (BMI) may impact cognitive function and brain volume in MS. Yet, there is paucity of evidence addressing the impact of BMI on cognitive function and brain volume in MS. Objectives: The purpose of this study was to examine the effects of BMI on normal appearing brain volume and cognitive function in patients with relapsing–remitting MS. Methods: A secondary data analysis of the NIH CombiRx study was conducted. Multivariate regression and mixed model analyses were executed to analyze the effect of BMI on brain volume and cognitive function. Results: The mean baseline age of the 768 participants was 38.2(SD = 9.4) years. 73% were female and 88.8% were Caucasian. The mean BMI was 28.8 kg/m2(SD = 6.7). The multivariate regression and mixed model analyses failed to show a clinical effect of BMI on brain volume and cognitive function. Conclusion: BMI did not show an effect on cognitive function and brain volume among MS patients. Although there is increased interest in the effects of modifiable factors on the course of MS, the effects of BMI on brain volume and cognitive function are debatable and warrant further research. ClinicalTrials.gov

Abstract

Background: Palliative care interventions in the ED capture high-risk patients at a time of crisis and can dramatically improve patient-centered outcomes. Objective: To understand the facilitators that contributed to the success of the Primary Palliative Care for Emergency Medicine (PRIM-ER) quality improvement pilot intervention. Design: Effectiveness was evaluated through semi-structured interviews. Reach outcomes were measured by percent of all full-time emergency providers (physicians, physician assistants, nurses) who completed the intervention education components and baseline survey assessing attitudes and knowledge on end-of-life care. Participants: Emergency medicine providers affiliated with two medical centers (N = 197). Interviews conducted with six key informants at both institutions. Approach: Interviews were recorded, transcribed, and analyzed using deductive and inductive approaches. Descriptive statistics include reach outcomes and baseline survey results. Key Results: Both sites successfully implemented all components of the intervention and achieved a high level (> 75%) of intervention reach. Two themes emerged as facilitators to successful effectiveness facilitators of PRIM-ER: (1) institutional leadership support and (2) leveraging established quality improvement (QI) processes. Institutional support included leveraging leadership with authority to (a) mandate trainings; (b) substitute PRIM-ER education for normally scheduled education; and (c) provide protected time to implement intervention components. Effectiveness was also enhanced by capitalizing on existing QI processes which included (a) leveraging interdisciplinary partnerships and communication plans and (b) monitoring performance improvement data. Conclusions: Capitalizing on strong institutional leadership support and established QI processes enhanced the reach and effectiveness of the PRIM-ER pilot. These findings will guide the PRIM-ER researchers in scaling up the intervention in the remaining 33 sites, as well as enhance the planning of other complex quality improvement interventions in clinical settings. Registration Details: ClinicalTrials.gov Identifier: NCT03424109; Grant Number: AT009844-01.

Abstract

Objectives: The ideal clinical model to deliver palliative care to patients with advanced kidney disease is currently unknown. Internationally, ambulatory kidney palliative care clinics have emerged with positive outcomes, yet there is limited data from the United States (US). In this exploratory study we report perceptions of a US-based ambulatory kidney palliative care clinic from the perspective of patient and caregiver attendees. The objective of this study was to inform further improvement of our clinical program. Methods: Semi-structured interviews were conducted to elicit the patient and caregiver experience. Eleven interviews (8 patients with chronic kidney disease stage IV or V and 3 caregivers) were analyzed using qualitative description design. Results: We identified 2 themes: “Communication addressing the emotional and physical aspects of disease” and “Filling gaps in care”; Subthemes include perceived value in symptom management, assistance with coping with disease, engagement in advance care planning, program satisfaction and patient activation. Significance of Results: Qualitative analysis showed that attendees of an ambulatory kidney palliative care clinic found the clinic enhanced the management of their kidney disease and provided services that filled current gaps in their care. Shared experiences highlight the significant challenges of life with kidney disease and the possible benefits of palliative care for this population. Further study to determine the optimal model of care for kidney palliative care is needed. Inclusion of the patient and caregiver perspective will be essential in this development.