Faculty Bibliography

OBJECTIVES/OBJECTIVE: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/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/CONCLUSIONS: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.

Americans near the end of life experience high rates of nonbeneficial, burdensome, and preventable hospital-based care. If patients' goals of care are unknown or unclear, they have higher rates of hospitalization at the end of life. The demand for palliative care has grown exponentially because of its impact on quality of life, symptom burden, and resource use, requiring the development of new palliative care models. Nurses' holistic outlook and patient-centered focus make them ideal to deliver telephonic palliative care. This article discusses 4 cases delivered by a nurse-led telephonic palliative care program, a part of the Emergency Medicine Palliative Care Access project, which is a randomized controlled trial comparing outpatient palliative care with nurse-led telephonic case management after an emergency department visit. Telephonic nurses discuss patients' goals, fears, hopes, and concerns regarding their illness and its trajectory that inform decisions for future interventions and treatments. In addition, they share this information with the patients' surrogate decision-makers and clinicians to facilitate care coordination and symptom management. For seriously ill patients, nurses' abilities and expertise, as well as the difficulties of providing care through in-person models of palliative care delivery, make a nurse-led telephonic model an optimal option.

INTRODUCTION/UNASSIGNED:Well-being and turnover intent represent key aspects to the promotion of a healthy workforce. Alarming levels of burnout and low levels of well-being have been documented in health professionals across care settings. Not only do high levels of burnout, low well-being and high turnover affect health professionals, but they are associated with poor patient care. However, limited research has investigated this topic specifically in hospice interdisciplinary team (IDT) members, nurses, chaplains, social workers. Thus, the purpose of this study was to explore hospice IDT members' well-being, and turnover intent. METHODS/UNASSIGNED:This observational, pilot study used quantitative surveys to examine the well-being, and turnover intention at baseline and at 3 months. Twenty-five hospice IDT members at one site participated. RESULTS/UNASSIGNED:Paired t-tests and percent change demonstrated significant decreases in compassion satisfaction (44.5 vs. 42.1, p = 0.04) and secondary traumatic stress score (18.5 vs. 13.3, p = 0.0001) and a significant increase in burnout score (17.6 vs. 20.5, p = 0.03) from baseline to follow up. Employee turnover slightly decreased from baseline to follow-up. CONCLUSIONS/UNASSIGNED:In this pilot study, hospice IDT members had low levels of well-being at baseline that worsened over 3-months indicating a higher potential risk for burnout. Moreover, given the COVID-19 pandemic, this may be an ominous sign of what lies ahead for hospice providers regarding turnover, leading to significant long-term staffing problems in the field. If these results hold true in a larger sample, it could necessitate developing and testing further strategies to ensure a healthy and stable workforce.

BACKGROUND AND OBJECTIVES/OBJECTIVE:Many investigators of Alzheimer's disease and related dementias (AD/ADRD) are unfamiliar with the embedded pragmatic clinical trials (ePCTs) and the indispensable pilot phase preceding ePCTs. This paper provides a much-needed example for such a pilot phase and discusses implementation barriers and additional infrastructure and implementation strategies developed in preparation for a nationwide AD/ADRD ePCT. RESEARCH DESIGN AND METHODS/METHODS:Two pilot trials were conducted in two hospices sequentially to refine and test Aliviado Dementia Care-Hospice Edition, a complex quality improvement intervention for advanced dementia symptom management. Readiness for the subsequent full-scale ePCT was assessed by three milestones: ≥80% training completion rate ("feasibility"), ≥80% post-training survey respondents indicating intention for practice changes ("applicability"), and at least one Aliviado care plan/assessment instrument administered in ≥75% of dementia patients admitted to home hospice within one-month post training ("fidelity"). RESULTS:Participants included 72 interdisciplinary team (IDT) members and 11 patients with AD/ADRD across the pilots. Feasibility, applicability, and fidelity outcomes (92%, 93%, and 100%, respectively) all surpassed the pre-established milestones (80%, 80%, and 75%). Main implementation challenges were related to hospice staff turnover, integration of the Aliviado toolbox materials within the electronic health records, and hospices' limited research experience and infrastructure. DISCUSSION AND IMPLICATIONS/UNASSIGNED:This pilot phase demonstrated feasibility, applicability, and fidelity required to proceed to the full-scale ePCT. Our study findings and discussions of additional infrastructure and implementation strategies developed following the pilot phase can inform researchers and clinicians interested in conducting AD/ADRD-related pilot studies for ePTCs or quality improvement initiatives. CLINICAL TRIAL NUMBER/UNASSIGNED:NCT03681119.

Importance/UNASSIGNED:Use of hospice has been demonstrated to be cost saving to the Medicare program and yet the extent to which hospice saves money across all payers, including whether it shifts costs to families, is unknown. Objective/UNASSIGNED:To estimate the association between hospice use and total health care costs including family out-of-pocket health care spending. Design Setting and Participants/UNASSIGNED:This retrospective cohort study of health care spending in the last 6 months of life used data from the nationally representative Medicare Current Beneficiary Survey (MCBS) between the years 2002 and 2018. Participants were MCBS participants who resided in the community and died between 2002 and 2018. Exposures/UNASSIGNED:Covariate balancing propensity scores were used to compare participants who used hospice (n = 2113) and those who did not (n = 3351), stratified by duration of hospice use. Main Outcomes and Measures/UNASSIGNED:Total health care expenditures were measured across payers (family out-of-pocket, Medicare, Medicare Advantage, Medicaid, private insurance, private health maintenance organizations, Veteran's Administration, and other) and by expenditure type (inpatient care, outpatient care, medical visits, skilled nursing, home health, hospice, durable medical equipment, and prescription drugs). Results/UNASSIGNED:The study population included 5464 decedents (mean age 78.7 years; 48% female) and 38% enrolled with hospice. Total health care expenditures were lower for those who used hospice compared with propensity score weighted non-hospice control participants for the last 3 days of life ($2813 lower; 95% CI, $2396-$3230); last week of life ($6806 lower; 95% CI, $6261-$7350); last 2 weeks of life ($8785 lower; 95% CI, $7971-$9600); last month of life ($11 747 lower; 95% CI, $10 072-$13 422); and last 3 months of life ($10 908 lower; 95% CI, $7283-$14 533). Family out-of-pocket expenditures were lower for hospice enrollees in the last 3 days of life ($71; 95% CI, $43-$100); last week of life ($216; 95% CI, $175-$256); last 2 weeks of life ($265; 95% CI, $149-$382); and last month of life ($670; 95% CI, $530-$811) compared with those who did not use hospice. Health care savings were associated with reductions in inpatient care. Conclusions and Relevance/UNASSIGNED:In this population-based cohort study of community-dwelling Medicare beneficiaries, hospice enrollment was associated with lower total health care costs for the last 3 days to 3 months of life. Importantly, we found no evidence of cost shifting from Medicare to families related to hospice enrollment. The magnitude of lower out-of-pocket spending to families who enrolled with hospice is meaningful to many Americans, particularly those with lower socioeconomic status.

CONTEXT/BACKGROUND:During the COVID-19 pandemic, community-based research studies experienced prolonged shutdowns unless able to pivot to remote study procedures. OBJECTIVES/OBJECTIVE: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/CONCLUSIONS: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.

CONTEXT/BACKGROUND:Evaluation of usability and mobile health content is critical for ensuring effective implementation of technology utilizing interventions tailored to the needs of hospice care providers for people living with dementia in community-based settings. OBJECTIVES/OBJECTIVE:To evaluate the usability, content, and "readiness to launch" of the Aliviado mobile health app for interdisciplinary team members participating in the Hospice Advanced Dementia Symptom Management and Quality of Life. METHODS:Usability of the Aliviado app was assessed in 86 respondents with an adapted IBM Computer Usability Satisfaction Questionnaire following Hospice Advanced Dementia Symptom Management and Quality of Life training and implementation of the mobile app. RESULTS:More than half of users receiving training employed the mobile app in practice. Users reported use as: Daily-6.3%, Weekly-39.6%, monthly-54.2%. The highest measured attributes were usefulness, value, and effectiveness. Over 90% deemed the app "ready to launch" with no or minimal problems. CONCLUSION/CONCLUSIONS:This study shows that a newly-developed mobile app is usable and can be successfully adopted for care of people living with dementia.

Background: Overlapping symptoms between delirium and behavioral and psychological symptoms of dementia (BPSD) often makes diagnosis of delirium superimposed on dementia (DSD) complex. This study aimed to examine differences in BPSD expression in PLWD with and without DSD at start of home healthcare (HHC) to help elucidate differences in expression.
Method(s): A cross-sectional analysis of baseline data from 107 PLWD (age 65+) enrolled into a semi-pragmatic, randomized controlled trial was performed. Baseline data were collected <=3 days of HHC admission. BPSD was measured by the Neuropsychiatric Inventory Questionnaire and delirium a modified 3-Mintue Diagnostic Interview for Confusion Assessment Method. Descriptive statistics and chi² or Fisher's exact tests were performed as appropriate to compare BPSD between groups.
Result(s): Of the 107 PLWD (mean age: 83 years; 61% female; 62% White; 14% Hispanic/Latino),19.6% had DSD; 93.5% had 1 BPSD; 79.4% had 3 BPSD. Of the 12 BPSD assessed, 10 were more prevalent in the DSD group: agitation, hallucinations, appetite changes, and delusions were >10% more prevalent; motor disturbance and nighttime behaviors were >20% more prevalent; motor disturbance was statistically significantly more prevalent (p=0.043). See Table 1.
Conclusion(s): Motor disturbance is statistically significantly more prevalent in DSD upon HHC admission; thus, if observed in PLWD, a follow-up DSD assessment may be warranted. Another 5 BPSD were >10%-20% more prevalent in DSD, though not statistically significant, the magnitude of the difference still suggests clinical importance