Creating a Dementia Friendly Community in an African American Neighborhood: Perspectives of People Living with Dementia, Care Partners, Stakeholders, and Community Residents
A dementia friendly community allows people with dementia and their care partners to remain engaged in their community well into the disease. This study presents the results of primary research aimed at exploring perceptions regarding building a dementia friendly community in an African American neighborhood in northeast Florida. Twelve focus groups and five interviews were conducted with people living with dementia, informal and formal care partners, community stakeholders and neighborhood residents, and analyzed using a grounded theory approach. Three main themes emerged from the analyses, including (1) perceived needs, (2) facilitators and barriers to being dementia friendly, and (3) opportunities for the community to become more dementia friendly. Study findings highlight the unique needs of a single African American neighborhood and the importance of culturally tailoring the dementia friendly model to diverse communities.
Early Versus Usual Palliative Care Consultation in the Intensive Care Unit
Objectives Palliative Medicine involvement in MICU patients have improved length of stay and mortality, but with varying effects on specific patient decision outcomes, such as, advance care planning. These studies have utilized Palliative Medicine later in the hospital or ICU course, with some evidence showing that earlier involvement resulted in better results. The purpose of this study was to evaluate the benefits of early (within 24 hours) palliative care consultation in medical ICU (MICU) patients to clinical and satisfaction outcomes. Methods An unblinded randomized study performed in the MICU in one academic hospital in the USA. Ninety-one adult patients admitted to MICU received a Palliative care medicine consultation within 24 hours as the intervention. Measurements and results Ninety-one patients admitted to the MICU underwent randomization with 50 patients randomly assigned to receive Palliative Medicine consultation and 41 patients randomly assigned to receive standard-of-care based on predefined criteria. The median satisfaction score was 23 points higher for the patients in the intervention group (P < .001). The median length of MICU stay was 5 days shorter in the intervention group compared to the control group (95% CI; 1 day to 18 days, P = .018). Advance care planning was completed in the hospital for 34% of patients in the intervention arm and 12% of patients in the controls arm (absolute risk difference 22%, 95% CI 4% to 37%, P = .016). Conclusion Early Palliative Medicine consultation within 24 hours of MICU admission showed significant benefits to patients by improving satisfaction and decreasing length of stay. This study provides evidence that Palliative Medicine involvement earlier in the course of severe disease is important. Further studies in other types of intensive care units (neurological and Cardiovascular) are necessary to determine their impact.
Dementia friendly community outreach improves research participation and dementia resource utilization among African Americans
AbstractBackgroundAfrican Americans are at greater risk of Alzheimer’s disease (AD) and AD‐related dementia (ADRD). They are also less likely to access dementia resources or participate in dementia research. The National Alzheimer’s Project Act (NAPA) calls for special attention to dementia‐related health disparities in high risk groups. Identifying effective tools to improve rates of dementia resource utilization and research participation by African Americans is essential to achieving dementia health equity.MethodTwo neighborhoods of Jacksonville, FL, defined by zip codes, were the focus of this study. Both zip codes have a large population of African American residents per 2010 US Census, and a history of hosting outreach activities by our Alzheimer’s Disease Research Center (ADRC). In one neighborhood, we modified the NAPA Dementia Friendly (DF) America toolkit to serve as a model of outreach. The second neighborhood served as a control (CON), in which we maintained our traditional outreach model of community‐based lectures. Primary outcome measures were: (1) enrollment in ADRC center‐related studies and (2) phone call volumes from individuals seeking dementia resource information. The outcomes in the DF and CON neighborhoods were compared via Fisher’s exact test to those in other zip codes in Jacksonville (OT).ResultIn the 18 months following implementation of the DF intervention, 54 African Americans enrolled in ADRC‐related research (19 DF, 3 CON, 32 OT), compared to 21 during the 18 months prior (2 DF, 0 CON, and 19 OT). The increase in DF residents enrolling in research following the intervention was statistically significant (p =0 .02) relative to OT residents. The increase observed in the CON residents was not statistically significant (p=1.0) compared to OT residents. Call volumes from African Americans increased from 13 prior to program implementation (all from OT) to 62 calls after implementation (22 DF, 1 CON, 39 OT). The increase among DF residents seeking information following the intervention was statistically significant (p =0.008) whereas the increase was not significant in the CON residents (p=0.54).ConclusionResults suggest that the NAPA DFA can be leveraged to improve dementia resource utilization and research participation among community‐dwelling African Americans.
Patient perceptions of palliative care in the process of allogeneic hematopoietic cell transplantation.
e24082 Background: Allogeneic hematopoietic cell transplantation (allo-HCT) is associated with significant short- and long-term sequelae that affect patients’ overall quality of life (QoL) and their physical and psychological well-being. Studies have shown improvement in patient QoL and physician satisfaction with palliative care involvement in the allo-HCT process. However, patient and physician perceptions regarding palliative care often impact timely referral. We conducted a prospective study to examine patient perceptions of palliative care both before and after palliative care consultation during evaluation for allo-HCT. Methods: This is a prospective, single-center study, of patients > 18 years of age, who were referred for a palliative care consultation as part of standard evaluation for allo-HCT. Patients were administered a pre- and post-visit internally derived questionnaire to assess their understanding and comfort level with palliative care. The primary objective of this study was to examine patient perceptions of palliative care consultation during evaluation for allo-HCT. Primary end point was the change in patient pre- and post- questionnaire responses. Secondary endpoint was the completion of advance care planning documentation pre- and post- consultation. Results: We enrolled 32 patients (male = 14) undergoing evaluation for allo-HCT with a primary diagnosis of AML (n = 8), NHL (n = 8), MDS (n = 7), ALL (n = 2), and other (n = 7). Following consultation with palliative care there was a statistically significant increase in patient understanding of the reason for the appointment, p = 0.0006. There was also a significant increase in patient’s knowledge of palliative care, with only 28% describing their knowledge as “good” or “excellent” prior to consultation and 79.3% after consultation, p < 0.0001. There was an observed positive, non-statistically significant, trend in patient comfort level with palliative medicine with only 20.7% (n = 6) describing their comfort as “high” or “very high” prior to consultation and 51.7% (n = 15) after consultation, p = 0.60. There was a higher rate of completion of advance care planning documentation following consultation with palliative medicine 56.3% vs 71.4%, p = 0.042. Conclusions: Palliative care consultation prior to allo-HCT increases a patient’s understanding of the role of palliative medicine as part of their allo-HCT and improves advance care planning. These findings need to be validated in a larger, multicenter, patient cohort.
Promoting sustainable dementia education in African American communities
AbstractBackgroundAfrican Americans are at higher risk of developing Alzheimer’s disease (AD) and AD‐related dementia. They are also more likely to live in communities with fewer dementia resources. The 2011 National Alzheimer’s Project Act calls for special attention to dementia‐related health disparities in high risk groups. Ensuring access to dementia‐specific information is one tactic for addressing disparities; however, the method by which information is delivered may play a role in how effectively that information is understood and retained over time.MethodWe delivered the same dementia education presentation to two comparable, predominantly African American neighborhoods in Jacksonville, FL. In one (intervention) community, the presentation was followed by an hour‐long focus group on what makes a community “dementia friendly”, using modified materials from the Dementia Friendly America (DFA) toolbox. In the other (control) community, the presentation was followed by a social hour allowing participants to interact with presenters and ask questions informally. Our primary objective was to assess the impact of the different conditions on AD knowledge.ResultsA 7‐item scale assessing AD knowledge was administered to immediately before and after the educational presentation (pre‐test, immediate post), and again two months later (Intervention group n=40; Control n=37). Additional, one‐year follow‐up was completed on the intervention community (n=21). Groups did not differ in AD knowledge at pre‐test (M=4.5 vs. 4.2, p=NS). At immediate post‐test, both groups improved their scores, but there was again no difference between groups (M=5.8 vs. 5.4, p=NS). At two‐month post‐testing, both groups declined in their knowledge score, but the control group declined more precipitously, yielding a significant group mean difference (M= 5.4 vs. 4.7, p=0.02). At one year follow‐up, a subsample of the intervention group (n=21) was re‐examined and demonstrated no significant decline in knowledge scores as compared to 2‐month follow‐up (M=5.7 vs. 5.4, p=0.36).ConclusionResults suggest that focus group discussion following dementia education as per the DFA model may contribute to greater retention of information and exert a sustainable impact on AD knowledge over time in an African American community setting.
Opinion & Special Articles: Competency in Serious Illness Communication for Neurology Residents
230 Background: Inpatient mortality review is commonly used to improve patient care. Individual review of outpatient deaths is less common, yet 30-day mortality after hospital stay is an important quality metric. In this study, we sought to identify opportunities for care improvement by reviewing outpatient mortalities for cancer patients who died within 30 days of hospitalization. Methods: We identified 48 patients at Mayo Clinic Florida, with a hematologic (heme) or solid tumor (onc) cancer, who died within 30 days of an index hospital stay in 2018. We created a 32-question review survey to address quality of care around the hospital stay. The review team consisted of 1) heme or onc attendings, 2) heme/onc fellows, and 3) palliative care attendings. Each case was reviewed by one member of each of the 3 groups, split into heme or onc cases. Discrepancies in objective data points were resolved by the research team. Results: Of 143 surveys sent to 13 physicians (3 heme), 112 responses from 11 physicians (1 heme) for 47 patients were received. Twenty-one patients (45%) received cancer therapy within 30 days of death, and 23 (49%) were admitted >2 times in 2 months prior to death. For onc cases, attendings rated prognosis as discussed 83% of the time, vs 65% of fellows and 39% of palliative care; in heme cases, the attending rated prognosis as discussed 11% of the time, vs 86% of fellows and 50% of palliative care. In heme cases, the attending rated expected survival <3 months in 33% of cases vs 71% by fellows and 89% by palliative care; in onc cases, the reviews were more consistent (79% attending, 85% fellow, 93% palliative care). See Table for timing of prognosis discussions and palliative care involvement. Conclusions: The most common improvement opportunities identified by reviewing heme/onc patients who died within 30 days of a hospital stay included documented prognosis discussion and involvement of palliative care. Opportunities differed between heme and onc patients. Future directions include identifying and mitigating barriers that providers face in reaching these goals for their patients. [Table: see text]
Patient perception of physician empathy in stroke telemedicine
Introduction We assessed patients’ perceptions of physician empathy during telemedicine consultations as compared to in-person consultations during clinical encounters for acute stroke. Methods This prospective cohort study was undertaken at a comprehensive stroke centre hub in collaboration with a distant community hospital spoke site. Eligible participants presented to hub or spoke emergency departments with suspected acute stroke within three hours of symptom onset. Participants were evaluated at the hub site in person or at the remote site via telemedicine by the same group of neurologists. Following acute care decisions, single-visit data including participant-reported assessments of physician empathy were collected within 24 h. The primary outcome was the Consultation and Relational Empathy score. The secondary outcome for the telemedicine cohort was the Telemedicine Patient Satisfaction Measure score. Results Between 31 May 2013–13 March 2019, 70 patients completed the study. Fifty patients were seen by telemedicine and 20 patients were seen in person. Median Consultation and Relational Empathy scores (with a possible score of 10–50) were 49 (range 27–50) for telemedicine and 45 (range 26–50) for in-person consultations (Wilcoxon rank sum p = 0.18). Each item of the Consultation and Relational Empathy questionnaire was rated very good or excellent by at least 87% of participants in the telemedicine group. The median Telemedicine Patient Satisfaction Measure score was 54 (range 12–60), with each item rated agree or strongly agree by at least 84% of participants. Discussion We found no difference between telemedicine and in-person visits in patient perception of physician empathy in acute stroke care. Therefore, we conclude that empathy can be conveyed by facial expression, voice and attentiveness in a telemedicine encounter and, in the setting of acute stroke care, does not require physical touch or proximity.