Faculty Bibliography

BACKGROUND:As more Americans age in place, it is critical to understand care delivery in the home. However, data on the range of home-based services provided by Medicare is limited. We define a taxonomy of clinical care in the home funded through fee-for-service Medicare and methods to identify receipt of those services. METHODS:We analyzed Fee-for-service (FFS) Medicare claims data from a nationally-representative cohort of older adults, the National Health and Aging Trends Study (NHATS), to identify home-based clinical care. We included 6,664 NHATS enrollees age ≥ 70 and living in the community, observed an average of 3 times each on claims-linked NHATS surveys. We examined provider and service type of home-based clinical care to identify a taxonomy of 5 types: home-based medical care (physician, physician assistant, or nurse practitioner visits), home-based podiatry, skilled home health care (SHHC), hospice, and other fee-for-service (FFS) home-based care. We further characterized home-based clinical care by detailed care setting and visit types. RESULTS:From 2011-2016, 17.8%-20.8% of FFS Medicare beneficiaries age ≥ 70 received Medicare-funded home-based clinical care. SHHC was the most common service (12.8%-16.1%), followed by other FFS home-based care (5.5%-6.5%), home-based medical care (3.2%-3.9%), and hospice (2.6%-3.0%). Examination of the other-FFS home-based care revealed imaging/diagnostics and laboratory testing to be the most common service. CONCLUSIONS:We define a taxonomy of clinical care provided in the home, serving 1 in 5 FFS Medicare beneficiaries. This approach can be used to identify and address research and clinical care gaps in home-based clinical care delivery.

BACKGROUND:Homebound older adults are medically complex and often have difficulty accessing outpatient medical care. Home-based primary care (HBPC) may improve care and outcomes for this population but data from randomized trials of HBPC in the United States are limited. METHODS:We conducted a randomized controlled trial of HBPC versus office-based primary care for adults ages ≥65 years who reported ≥1 hospitalization in the prior 12 months and met the Medicare definition of homebound. HBPC was provided by teams consisting of a physician, nurse practitioner, nurse, and social worker. Data were collected at baseline, 6- and 12-months. Outcomes were quality of life, symptoms, satisfaction with care, hospitalizations, and emergency department (ED) visits. Recruitment was terminated early because more deaths were observed for intervention patients. RESULTS:The study enrolled 229 patients, 65.4% of planned recruitment. The mean age was 82 (9.0) years and 72.3% had dementia. Of those assigned to HBPC, 34.2% never received it. Intervention patients had greater satisfaction with care than controls (2.26, 95% CI 1.46-3.06, p < 0.0001; effect size 0.74) and lower hospitalization rates (-17.9%, 95% CI -31.0% to -1.0%; p = 0.001; number needed to treat 6, 95% CI 3-100). There were no significant differences in quality of life (1.25, 95% CI -0.39-2.89, p = 0.13), symptom burden (-1.92, 95% CI -5.22-1.37, p = 0.25) or ED visits (1.2%, 95% CI -10.5%-12.4%; p = 0.87). There were 24 (21.1%) deaths among intervention patients and 12 (10.7%) among controls (p < 0.0001). CONCLUSION/CONCLUSIONS:HBPC was associated with greater satisfaction with care and lower hospitalization rates but also more deaths compared to office-based primary care. Additional research is needed to understand the nature of the higher death rate for HBPC patients, as well as to determine the effects of HBPC on quality of life and symptom burden given the trial's early termination.

BACKGROUND/UNASSIGNED:There has been a call by both patients and health professionals for the integration of palliative care with nephrology care, yet there is little evidence describing the effect of this approach. The objective of this paper is to report the feasibility and acceptability of a pilot randomized controlled trial testing the efficacy of integrated palliative and nephrology care. METHODS/UNASSIGNED:English speaking patients with CKD stage 5 were randomized to monthly palliative care visits for 3 months in addition to their usual care, as compared with usual nephrology care. Feasibility of recruitment, retention, completion of intervention processes, and feedback on participation was measured. Other outcomes included differences in symptom burden change, measured by the Integrated Palliative Outcome Scale-Renal, and change in quality of life, measured by the Kidney Disease Quality of Life questionnaire and completion of advance care planning documents. RESULTS/UNASSIGNED:Of the 67 patients approached, 45 (67%) provided informed consent. Of these, 27 patients completed the study (60%), and 14 (74%) of those in the intervention group completed all visits. We found small improvements in overall symptom burden (-2.92 versus 1.57) and physical symptom burden scores (-1.92 versus 1.79) in the intervention group. We did not see improvements in the quality-of-life scores, with the exception of the physical component score. The intervention group completed more advance care planning documents than controls (five health care proxy forms completed versus one, nine Medical Orders for Life Sustaining Treatment forms versus none). CONCLUSIONS/UNASSIGNED:We found that pilot testing through a randomized controlled trial of an ambulatory integrated palliative and nephrology care clinical program was feasible and acceptable to participants. This intervention has the potential to improve the disease experience for those with nondialysis CKD and should be tested in other CKD populations with longer follow-up. CLINICAL TRIALS REGISTRY NAME AND REGISTRATION NUMBER/UNASSIGNED:Pilot Randomized-controlled Trial of Integrated Palliative and Nephrology Care Versus Usual Nephrology Care, NCT04520984.

In the current study, we conducted one-on-one interviews with primary care providers (PCPs) and family care partners (FCPs) and held focus groups with interdisciplinary adult day service center (ADSC) staff to understand the perspectives of care providers across community settings regarding early warning signs of acute illnesses in persons living with dementia (PLWD). We used content analysis to analyze qualitative data. Warning signs of acute illnesses in PLWD fell into one of five categories, including new onset changes in (a) physical functions, (b) moods or behaviors (psychological), (c) social interactions, (d) speech, or (e) appearance. FCPs (n = 11) focused on physical changes, whereas ADSC staff (n = 33) emphasized changes in speech and social interactions in addition to the other categories. Although ADSC staff and PCPs (n = 22) focused on changes in functions and moods, each group described these changes differently. ADSC staff possess rich information that can be used to identify acute changes in PLWD and describe a broader range of warning signs compared to PCPs and FCPs. FCPs may benefit from further training in distinguishing between normal disease progression and acute illness. Future research should focus on the implementation of standardized tools across community-based care providers to simplify the identification and reporting of early warning signs in PLWD. [Journal of Psychosocial Nursing and Mental Health Services, xx(x), xx-xx.].

In order to reduce care partner strain and support aging in place for people living with Alzheimer's Disease and Alzheimer's Disease Related Dementias (AD/ADRD), adult day centers (ADCs) must manage behavioral and psychological symptoms of dementia (BPSD). The purpose of this paper is to identify person-centered care strategies used by center staff to manage BPSD. Six focus groups with center staff (n = 31) were conducted. Data were analyzed using directed content analysis guided by Kitwood's conceptual approach to cultivating personhood in dementia care. Themes were identified and organized within Kitwood's framework. The results demonstrate that staff incorporate evidence-based person-centered approaches to AD/ADRD care that align with Kitwood's principles of comfort, attachment, inclusion, and identity. Staff individualize their approach to people with AD/ADRD within a group setting. They monitor, engage, socially stimulate, and, when needed, de-stimulate them. Centers are flexible social environments with underrecognized expertise managing BPSD using person-centered approaches.

BACKGROUND:Hospice care was initially designed for seriously ill individuals with cancer. Thus, the model and clinicians were geared toward caring for this population. Despite the proportion of persons living with dementia (PLWD) receiving hospice care substantially increased over the past 10 years, and their longer lengths of stay, established hospice interventions for this population are scarce. No systematic review has previously evaluated those interventions that do exist. We synthesized hospice intervention studies for PLWD, their families, and hospice professionals by describing the types of interventions, participants, outcomes, and results; assessing study quality; and identifying promising intervention strategies. METHODS:A systematic review was conducted using a comprehensive search of five databases through March 2021 and follow-up hand searches. Included studies were peer-reviewed, available in English, and focused on hospice interventions for persons with dementia, and/or care partners, and clinicians. Using pre-determined inclusion and exclusion criteria, data was extracted guided by the Cochrane Checklist, and quality was assessed using a 26-item Consolidated Standards of Reporting Trials (CONSORT) Checklist. RESULTS:The search identified 3235 unique studies in total, of which 10 studies met inclusion criteria. The search revealed three types of interventions: clinical education and training, usual care plus care add-on services, and "other" delivered to 707 participants (mostly clinicians). Five studies included underrepresented racial and ethnic groups. Outcomes measured knowledge and skills, psychosocial and health outcomes, feasibility, and acceptability, with significant improvements in six studies. Study quality was reflective of early-stage research with clinical education and training strategies showing deliberate progression towards real-world efficacy testing. IMPLICATIONS/CONCLUSIONS:Hospice interventions for PLWD are sparse and in early-phase research. More research is needed with rigorous designs, diverse samples, and outcomes considering the concordance of care.

OBJECTIVE:This study aimed to examine the impact of COVID-19 on hospice Interdisciplinary team (IDT) members' self-reported stress and identify possible sources of moral distress. METHODS:A cross-sectional survey was conducted using Qualtrics to understand the impact of COVID-19 on quality improvement initiative implementation and hospice IDT members' general and dementia-specific care provision. Directed qualitative content analysis was used to analyze hospice IDT members' responses from five open-ended survey questions that were indicative of stress and possible moral distress. RESULTS:The final sample consisted of 101 unique respondents and 175 comments analyzed. Three categories related to sources of moral distress based on hospice IDT member survey responses were identified: (1) impact of telehealth, personal protective equipment (PPE), and visit restrictions on relationships; (2) lack of COVID-19-specific skills; and (3) organizational climate. Sources of moral distress were categorized in 40% of all responses analyzed. SIGNIFICANCE OF RESULTS/CONCLUSIONS:This study is one of the first to document and confirm evidence of potential stress and moral distress amongst hospice IDT members during COVID-19. It is imperative given the possible negative impact on patient care and clinician well-being, that future research and interventions incorporate mechanisms to support clinicians' emotional and ethical attunement and support organizations to actively engage in practices that address clinician moral distress resulting from restrictive environments, such as the one necessitated by COVID-19.