Abraham A. Brody

Abstract

Objectives: Our study documented communication workflows across adult day care centers (ADCs) and primary care providers (PCPs) around complex needs of persons living with dementia (PLWD). We also identified barriers and facilitators to productive communication in clinical decision support and clinical information systems. Materials and Methods: We conducted 6 focus groups with ADC staff (N=33) and individual semistructured interviews with PCPs (N=22) in California. The eHealth Enhanced Chronic Care Model was used to frame the directed qualitative content analysis. Results: Our results captured cumbersome and ineffective workflows currently used to exchange information across PCPs and ADCs. Stakeholders characterized current communication as (1) infrequent, (2) delayed, (3) incomplete, (4) unreliable, (5) irrelevant, and (6) generic. Conversely, communication that was bidirectional, relevant, succinct, and interdisciplinary was needed to elevate the standard of care for PLWD. Discussion and Conclusion: ADCs possess a wealth of information that can support clinical decision-making across community-based providers involved in the care of PLWD, especially PCPs. However, effective information exchange is mired by complicated workflows that rely on antiquated technologies (eg, facsimile) and standard templates. Current information exchange largely focuses on satisfying regulatory guidelines rather than supporting clinical decision-making. Integrating community-based services into the health care continuum is a necessary step in elevating the standard of care for PLWD. In the absence of interoperable electronic health records, which may not be financially viable for ADCs, other options, such as mobile health, should be explored to facilitate productive information exchange of personalized relevant information.

Abstract

Context: During the COVID-19 pandemic, community-based research studies experienced prolonged shutdowns unless able to pivot to remote study procedures. Objectives: To describe the revision of two National Institutes of Health funded community-based palliative-focused clinical trials serving underserved populations to accommodate remote subject enrollment and examine its impact. Methods: Transitioning to remote processes required multiple protocol and procedural changes including: altering informed consent processes; reducing the number of surveys administered; adding internet access as an inclusion criterion. To understand technological challenges, a screening tool was developed for one study to identify potentially eligible subjects’ technology abilities and accessibility. Results: Subjects’ limited access to the internet and internet-enabled devices and discomfort with technology led to changes in recruitment patterns. Lack of familiarity with technology increased the amount of time it took research team members and subjects to connect remotely. Patients with significant cognitive and/or sensory deficits were at higher risk of experiencing fatigue during remote study visits leading to streamlining of data collection. A researcher-developed technology screening tool found that potential subjects were not comfortable with videoconferencing through Zoom expressing a preference for phone visits. Reduced travel time made scheduling remote study visits more efficient. Conclusion: Future community- and home-based palliative care trials must consider the best way to utilize remote recruitment, enrollment, and data collection processes to increase efficiency and reduce costs. Researchers should consider technology accessibility and train staff to ensure the greatest possible opportunity to recruit underserved populations who have traditionally been underrepresented in research studies.

Abstract

Background: Forty-five percent of hospice patients currently have a primary or secondary diagnosis of Alzheimer’s disease or related disorders. However, few programs have focused specifically on assisting hospices in providing evidence-based symptom management to persons living with dementia (PLWD). Objective: To adapt and pilot the training component of Aliviado Dementia Care, a dementia symptom management quality improvement program originally developed for home healthcare, for use by social workers as part of the hospice interdisciplinary team. Design: A prospective pre-post design was utilized, measuring knowledge, confidence, and attitudes at baseline, and immediately and 1-month post-training. Analysis was performed using paired t-tests and repeated measures ANOVA. Subjects: Hospice social workers currently practicing in the United States with at least 1 year of experience. Measurements: The Dementia Symptom Knowledge Assessment and a post-training continuing education evaluation form. Results: Forty-six subjects were enrolled, of whom 26 completed the first post-test and 23 both post-tests. There was a poor baseline level of knowledge and confidence in caring for PLWD. Significant improvements occurred following training, particularly in implementing non-pharmacologic interventions for behavioral and psychological symptoms of dementia (BPSD) (16.64% increase, p <.0001) and confidence in managing behavioral symptoms (16.86%, p =.01) and depression (25.18%, p <.0001). Changes were maintained over time. All respondents were either very satisfied or satisfied with the quality and content of the program. Conclusions: The training modules of Aliviado Dementia Care were successfully tailored for use by hospice social workers, showing significant improvement in knowledge and confidence in caring for behavioral symptoms in PLWD. Future work will examine whether the larger program, including this training, can subsequently improve patient outcomes in hospice.

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.