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BACKGROUND: Home-based primary care (HBPC) is an important care delivery model for high-need older adults. Currently, target patient populations vary across HBPC programs, hindering expansion and large-scale evaluation. OBJECTIVES: Develop and validate criteria that identify appropriate HBPC target populations. RESEARCH DESIGN: A modified Delphi process was used to achieve expert consensus on criteria for identifying HBPC target populations. All criteria were defined and validated using linked data from Medicare claims and the National Health and Aging Trends Study (NHATS) (cohort n=21,727). Construct validation involved assessing demographics and health outcomes/expenditures for selected criteria. SUBJECTS: Delphi panelists (n=29) represented diverse professional perspectives. Criteria were validated on community-dwelling Medicare beneficiaries (age ≥70) enrolled in NHATS. MEASURES: Criteria were selected via Delphi questionnaires. For construct validation, sociodemographic characteristics of Medicare beneficiaries were self-reported in NHATS, and annual health care expenditures and mortality were obtained via linked Medicare claims. RESULTS: Panelists proposed an algorithm of criteria for HBPC target populations that included indicators for serious illness, functional impairment, and social isolation. The algorithms Delphi-selected criteria applied to 16.8% of Medicare beneficiaries. These HBPC target populations had higher annual health care costs [Med (IQR): $10,851 (3316, 31,556) vs. $2830 (913, 9574)] and higher 12-month mortality [15% (95% CI: 14, 17) vs. 5% (95% CI: 4, 5)] compared with the total validation cohort. CONCLUSIONS: We developed and validated an algorithm to define target populations for HBPC, which suggests a need for increased HBPC availability. By enabling objective identification of unmet demands for HBPC access or resources, this algorithm can foster robust evaluation and equitable expansion of HBPC.

BACKGROUND: Medicare-funded home healthcare (HHC) delivers skilled nursing, therapy, and related services through visits to the patients home. Nearly one-third (31%) of HHC patients have diagnosed dementia, but little is currently known regarding how HHC utilization and care delivery differ for persons living with dementia (PLwD). METHODS: We drew on linked 2012-2018 Health and Retirement Study and Medicare claims for a national cohort of 1 940 community-living older adults. We described differences in HHC admission, length of stay, and referral source by patient dementia status and used weighted, multivariable logistic and negative binomial models to estimate the relationship between dementia and HHC visit type and intensity while adjusting for sociodemographic characteristics, health and functional status, and geographic/community factors. RESULTS: PLwD had twice the odds of using HHC during a 2-year observation period, compared to those without dementia (odds ratio [OR]: 2.03; p < .001). They were more likely to be referred to HHC without a preceding hospitalization (49.4% vs 32.1%; p < .001) and incurred a greater number of HHC episodes (1.4 vs 1.0; p < .001) and a longer median HHC length of stay (55.8 days vs 40.0 days; p < .001). Among post-acute HHC patients, PLwD had twice the odds of receiving social work services (unadjusted odds ratio [aOR]: 2.15; p = .008) and 3 times the odds of receiving speech-language pathology services (aOR: 2.92; p = .002). CONCLUSIONS: Findings highlight HHCs importance as a care setting for community-living PLwD and indicate the need to identify care delivery patterns associated with positive outcomes for PLwD and design tailored HHC clinical pathways for this patient subpopulation.

The use of home-based medical care differed in Medicare Advantage and traditional Medicare in 2018. Having exactly one such visit was thirty-one times as likely for Medicare Advantage beneficiaries (18.6 percent) as for traditional Medicare beneficiaries (0.6 percent), likely reflecting incentives in the Medicare Advantage program to code all accurate diagnoses. Multiple home-based medical care visits were less likely in Medicare Advantage than in traditional Medicare (1.6 percent versus 2.1 percent of beneficiaries, respectively).

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

BackgroundAs 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.MethodsWe 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.ResultsFrom 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.ConclusionsWe 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.

OBJECTIVES: Home-based medical care (HBMC) delivers physician or advanced practice provider-led medical services for patients in private residences and domiciliary settings (eg, assisted living facilities, group/boarding homes). We aimed to examine the time trends in HBMC utilization by care settings. DESIGN: Analyses of HBMC utilization at the national and state levels during the years 2012-2019. SETTING AND PARTICIPANTS: With Medicare public use files, we calculated the state-level utilization rate of HBMC among fee-for-service (FFS) Medicare beneficiaries, measured by visits per 1000 FFS enrollees, in private residences and domiciliary settings, both separately and combined. METHODS: We assessed the trend of HBMC utilization over time via linear mixed models with random intercept for state, adjusting for the following state-level markers of HBMC supply and demand: number of HBMC providers, state ranking of total assisted living and residential care capacity, and the proportion of FFS beneficiaries with dementia, dual eligibility for Medicaid, receiving home health services, and Medicare Advantage. RESULTS: Total HBMC visits in the United States increased from 3,911,778 in 2012 to 5,524,939 in 2019. The median (interquartile range) state-level HBMC utilization rate per 1000 FFS population was 67.6 (34.1-151.3) visits overall, 17.3 (7.9-41.9) visits in private residences, and 47.7 (23.1-86.6) visits in domiciliary settings. The annual percentage increase of utilization rates was significant for all care settings in crude models (3%-8%), and remained significant for overall visits and visits in domiciliary settings (2%-4%), but not in private residences. CONCLUSIONS AND IMPLICATIONS: The national-level growth in HBMC from 2012-2019 was largely driven by a growth of HBMC occurring in domiciliary settings. To meet the needs of a growing aging population, future studies should focus efforts on policy and payment issues to address inequities in access to HBMC services for homebound older adults, and examine drivers of HBMC growth at regional and local levels.

BackgroundOver the past decade, medical care has shifted from institutions into home settings-particularly among persons with dementia. Yet it is unknown how home-based clinical services currently support persons with dementia, and what factors shape access.MethodsUsing the National Health and Aging Trends Study linked to Medicare claims 2012-2017, we identified 6664 community-dwelling adults age ≥ 70 years enrolled in fee-for-service Medicare. Annual assessment of dementia status was determined via self-report, cognitive interview, and/or proxy assessment. Receipt of four types of home-based clinical care (home-based medical care (HBMC) (i.e., nurse practitioner, physician, or physician assistant visits), skilled home health care (SHHC), podiatry visits, and other types of home-based clinical services (e.g., behavioral health)) was assessed annually. We compared age-adjusted rates of home-based clinical care by dementia status and determined sociodemographic, health, and environmental characteristics associated with utilization of home-based clinical care among persons with dementia.ResultsNearly half (44.4%) of persons with dementia received any home-based clinical care annually compared to only 14.4% of those without dementia. Persons with dementia received substantially more of each type of home-based clinical care than those without dementia including a 5-fold increased use of HBMC (95% CI = 3.8-6.2) and double the use of SHHC (95% CI = 2.0-2.5). In adjusted models, Hispanic/Latino persons with dementia were less likely to receive HBMC (OR = 0.32; 95% CI = 0.11-0.93). Use of HBMC, podiatry, and other home-based clinical care was significantly more likely among those living in residential care facilities, in the Northeast and in metropolitan areas.ConclusionAlthough almost half of community-dwelling persons with dementia receive home-based clinical care, there is significant variation in utilization based on race/ethnicity and environmental context. Increased understanding as to how these factors impact utilization is necessary to reduce potential inequities in healthcare delivery among the dementia population.

BackgroundHomebound older adults have heightened risks for isolation and negative health consequences, but it is unclear how COVID-19 has impacted them. We examine social contact and mood symptoms among previously homebound older adults during the COVID-19 pandemic.Design/settingCross-sectional analysis using data from the National Health and Aging Trends Study (NHATS), a nationally-representative longitudinal study of aging in the USA.ParticipantsA total of 3,112 community-dwelling older adults in 2019 who completed the COVID-19 survey in the summer/fall of 2020.MeasurementsHomebound status was defined via self-report as rarely/never leaving home or leaving the house with difficulty or help in the prior month. We measured limited social contact during COVID-19 (in-person, telephone, video or email contacts ResultsAmong homebound older adults, 13.2% experienced limited social contact during COVID-19 vs. 6.5% of the non-homebound. Differences in social contact were greatest for contacts via email/text/social media: 54.9% of the homebound used this DiscussionIsolation among homebound older adults increased during COVID-19, partially due to differences in technology use. We must ensure that homebound persons have the connection and care they need including new technologies for communication during and beyond COVID-19.

This cohort study evaluates the prevalence of homebound older adults in the US from 2011 to 2020 and assesses whether the COVID-19 pandemic was associated with a change in prevalence.

The rapid deployment of video visits during COVID-19 may have posed unique challenges for home-based primary care (HBPC) practices due to their hands-on model of care and older adult population. This qualitative study examined provider perceptions of video visits during the first wave of the COVID-19 crisis in New York City (NYC) through interviews with HBPC clinical/medical directors, program managers, nurse practitioners/nurse managers, and social work managers (n = 13) at six NYC-area practices. Providers reported a combination of commercial (health system-supported) and consumer (e.g., FaceTime) technological platforms was essential. Video visit benefits included triaging patient needs, collecting patient information, and increasing scheduling capacity. Barriers included cognitive and sensory abilities, technology access, reliance on caregivers and aides, addressing sensitive topics, and incomplete exams. Effectively integrating video visits requires considering how technology can be proactively integrated into practice. A policy that promotes platform flexibility will be crucial in fostering video integration.

ObjectivesApproximately 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.DesignMixed-methods national survey.Setting and participantsHBPC practices identified as members of the American Academy of Homecare Medicine (AAHCM) or participants of Home-Centered Care Institute (HCCI) training programs.MethodsOnline 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.ResultsSeventy-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 implicationsHBPC 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.

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.

Background/objectivesApproximately 2 million people, or 6% of older adults in the United States, are homebound. In cross-sectional studies, homebound older adults have high levels of morbidity and mortality, but there is little evidence of longitudinal outcomes after becoming homebound. The aim of this research is to prospectively assess over 6 years the dynamics of homebound status, ongoing community residence, and death in a population of community-dwelling older adults who are newly homebound.Design/settingProspective cohort study using 2011-2018 data from the National Health and Aging Trends Study (NHATS), an annual, nationally-representative longitudinal study of aging in the United States.ParticipantsTwo hundred and sixty seven newly homebound older adults in 2012.MeasurementsHomebound status was defined via self-report as living in the community but rarely/never leaving home in the prior month. Semi-homebound was defined as leaving the house only with difficulty or help.ResultsOne year after becoming newly homebound, 33.1% remained homebound, 22.8% were completely independent, 23.8% were semi-homebound, 2.2% were in a nursing home, and 18.0% died. Homebound status is highly dynamic; 6 years after becoming homebound, 13.5% remained homebound and 65.0% had died. Recovering from being homebound at 1 year was associated with younger age and lower baseline rates of receiving help with activities of daily living, in particular, with bathing.ConclusionHomebound status is a dynamic state. Even if transient, becoming homebound is strongly associated with functional decline and death. Identifying newly homebound older adults and developing interventions to mitigate associated negative consequences needs to be prioritized.

Research on professional burnout during the pandemic has focused on hospital-based health care workers. This study examined the psychological impact of the pandemic on home-based primary care (HBPC) providers. We interviewed 13 participants from six HBPC practices in New York City including medical/clinical directors, program managers, nurse practitioners, and social workers and analyzed the transcripts using inductive qualitative analysis approach. HBPC providers experienced emotional exhaustion and a sense of reduced personal accomplishment. They reported experiencing grief of losing many patients at once and pressure to adapt to changing circumstances quickly. They also reported feeling guilty for failing to protect their patients and reduced confidence in their professional expertise. Strategies to combat burnout included shorter on-call schedules, regular condolence meetings to acknowledge patient deaths, and peer support calls. Our study identifies potential resources to improve the well-being and reduce the risk of burnout among HBPC providers.

Background/objectivesCOVID-19 required rapid innovation throughout the healthcare system. Home-based primary care (HBPC) practices faced unique challenges maintaining services for medically complex older populations for whom they needed to adapt a traditionally hands-on, model of care to accommodate restrictions on in-person contact. Our aim was to determine strategies used by New York City (NYC)-area HBPC practices to provide patient care during the first wave of the COVID-19 pandemic with the goal of informing planning and preparation for home-based practices nationwide.DesignCross-sectional qualitative design using semi-structured interviews.SettingHBPC practices in the NYC metro area during spring 2020.ParticipantsHBPC leadership including clinical/medical directors, program managers, nurse practitioners/nursing coordinators, and social workers/social work coordinators (n = 13) at 6 NYC-area practices.MeasurementsSemi-structured interviews explored HBPC practices' COVID-19 care delivery challenges, adaptations, and advice for providers. Interviewers probed patient care, end-of-life care, telehealth, community-based services and staffing. Interviews were recorded and transcribed. Data were analyzed through a combined inductive and deductive thematic approach.ResultsParticipants described care delivery and operational adaptations similar to those universally adopted across healthcare settings during COVID-19, such as patient outreach and telehealth. HBPC-specific adaptations included mental health services for patients experiencing depression and isolation, using multiple modalities of patient interactions to balance virtual care with necessary in-person contact, strategies to maintain patient trust, and supporting team connection of staff through daily huddles and emotional support during the surge of deaths among long-standing patients.ConclusionNYC-area HBPC providers adapted care delivery and operations rapidly during the height of the COVID-19 pandemic. Keeping older, medically complex patients safe in their homes required considerable flexibility, transparency, teamwork, and partnerships with outside providers. As the pandemic continues to surge around the United States, HBPC providers may apply these lessons and consider resources needed to prepare for future challenges.

Background/objectivesThe Medicare home health benefit provides episodic skilled home-based clinical care to the growing population of community-dwelling persons with dementia. As of January 1, 2020, home health payment changed: episodes shortened from 60 to 30 days, and episodes initiated in the community are now reimbursed at lower rates than episodes following institutional stays. We aim to assess the potential impact of these policy changes on this population.Design/settingCross-sectional study using the Medicare claims-linked National Health and Aging Trends Study (NHATS).ParticipantsA total of 1,867 NHATS respondents who received home health between 2011 and 2017.MeasurementsDementia was defined through both self-report and a validated cognitive assessment through NHATS. We described the demographic, socioeconomic, and health characteristics of older adults with dementia receiving home health compared with those without dementia. We then assessed the association of dementia with both receiving community-initiated home health (vs postinstitutional) and visit timing during the home health episode.ResultsOver a follow-up period of just over 4 years, 50.2% of persons with dementia used home health compared with 15.3% of persons without dementia. Most home health provided to persons with dementia was initiated in the community (61%), compared with 37% of episodes provided to persons without dementia. Persons with dementia were more likely to receive care in days 31 to 60 of the episode compared with those without dementia.ConclusionsShortening episodes and reimbursing community-initiated episodes at lower rates may disproportionately impact the highly vulnerable population of older adults with dementia, who receive more community-initiated care over longer time periods. Our work highlights the need to better understand the unique role of home health in meeting gaps in both acute- and long-term care systems for older adults with dementia. J Am Geriatr Soc 68:2303-2309, 2020.

Millions of older Americans are homebound and may benefit from home-based medical care. We characterized the receipt of this care among community-dwelling, fee-for-service Medicare beneficiaries ages sixty-five and older surveyed in the National Health and Aging Trends Study between 2011 and 2017. Five percent of those surveyed received any home-based medical care between 2011 and 2017 (mean follow-up time per person was 3.4 years), and 75 percent of home-based medical care recipients were homebound. Only 11 percent of the total homebound population (approximately 4.4 million fee-for-service Medicare beneficiaries in 2017) received any home-based medical care between 2011 and 2017. Receipt of home-based medical care was more common among homebound beneficiaries living in metropolitan areas and assisted living facilities, which suggests that geographic factors create operational efficiencies for home-based medical care practices that may improve their financial sustainability within the fee-for-service reimbursement setting. The significant unmet needs of this high-need, high-cost population and the known health and cost benefits of home-based medical care should spur stakeholders to expand the availability of this care.

Background Social isolation is a well-known risk factor for poor health outcomes, including incident dementia, yet its associations with outcomes among persons living with dementia are understudied. We examined the association between social isolation and hospitalization among a nationally representative sample of older adults with and without dementia. Methods This observational cohort study included 5 533 community-dwelling Medicare beneficiaries from the 2015 and 2016 National Health and Aging Trends Study (NHATS). Using multivariable logistic regression analyses, we examined associations between social isolation and hospitalization in the following year, examining differences by dementia status. Social isolation was measured using a 4-item typology. Dementia was identified using a prespecified classification in NHATS. Results 20.7% of older adults were socially isolated. Social isolation was more prevalent among persons with dementia (35.4%) than among those without dementia (19.0%) (p  < .001). Among persons with dementia, social isolation was associated with 1.68 greater odds of hospitalization (confidence interval [CI]: 1.23–2.28), translating into a 9% average increase in the predicted probability of hospitalization for persons with dementia who were socially isolated compared to those who were not (p  = .001). In the combined sample that included persons with and without dementia, there was a significant moderation effect of dementia on the association between social isolation and hospitalization (odds ratio: 1.70; CI: 1.19–2.43). Conclusions For persons with dementia, social isolation is prevalent and associated with greater odds of subsequent hospitalization. Efforts to reduce acute healthcare utilization should explore ways to bolster social connection to improve health outcomes among persons with dementia. [ABSTRACT FROM AUTHOR]

Interest in home-based care is increasing among Medicare Advantage plans, but information on the characteristics of homebound beneficiaries is limited. This study examines the prevalence, characteristics, predictors, health service use, and mortality outcomes of homebound beneficiaries of a large national plan. Visual Abstract. Epidemiology of Homebound Population Among Beneficiaries of a Large National Medicare Advantage Plan: Interest in home-based care is increasing among Medicare Advantage plans, but information on the characteristics of homebound beneficiaries is limited. This study examines the prevalence, characteristics, predictors, health service use, and mortality outcomes of homebound beneficiaries of a large national plan. Background: Interest in home-based care is increasing among Medicare Advantage (MA) plans. The epidemiology of homebound MA beneficiaries is unknown. Objective: To determine the prevalence, characteristics, predictors, health service use, and mortality outcomes of homebound beneficiaries of a large national MA plan. Design: Cross-sectional. Setting: National MA plan. Participants: Humana MA beneficiaries in 2022 (n  = 2 435 519). Measurements: Homebound status was assessed via in-home assessment using previously defined categories: homebound (never or rarely left home in the past month), semihomebound (left home with assistance, had difficulty, or needed help leaving home), and not homebound. Demographic, clinical, health service use, and mortality outcomes were compared by homebound status. Results: In 2022, the overall prevalence of homebound beneficiaries was 22.0% (8.4% of beneficiaries were homebound, and 13.6% were semihomebound). In adjusted models, female sex (odds ratio [OR], 1.36 [95% CI, 1.35 to 1.37), low-income status or dual eligibility for Medicare and Medicaid (OR, 1.56 [CI, 1.55 to 1.57]), dementia (OR, 2.36 [CI, 2.33 to 2.39]), and moderate to severe frailty (OR, 4.32 [CI, 4.19 to 4.45]) were predictive of homebound status. In multivariable logistic regression, homebound status was associated with increased odds of any emergency department visit (OR, 1.14 [ CI, 1.14 to 1.15]), any inpatient hospital admission (OR, 1.44 [CI, 1.42 to 1.46]), any skilled-nursing facility admission (OR, 2.18 [CI, 2.13 to 2.23]), and death (OR, 2.55 [CI, 2.52 to 2.58]). Limitation: The study period overlapped the tail end of the COVID-19 pandemic, and data were derived from a single national MA plan, which limits generalizability. Conclusion: Overall homebound prevalence in a national MA plan was 22.0% and was independently associated with increased health service use and mortality. Study findings can inform strategic initiatives to identify and manage care for homebound beneficiaries. Primary Funding Source: Humana, under a collaborative research agreement with Johns Hopkins University. [ABSTRACT FROM AUTHOR]

Background: Hospice care frequently includes hands-on care from hospice aides, but the need for hospice aide care may vary in residential settings (e.g., assisted livings and nursing homes). Objectives: The objective of this study is to compare hospice aide use and factors associated with use across residential settings. Design: This longitudinal cohort study used data from Medicare beneficiaries in the United States enrolled in the Medicare Current Beneficiary Survey (MCBS) who died between 2010 and 2019 and had hospice claims and available residential setting data in MCBS (n = 1,915). Analysis: Decedent hospice aide use was compared by residential settings; multivariable models controlling for sociodemographic, clinical/functional, and hospice characteristics examined factors associated with hospice aide care in different residential settings. Results: Hospice aide visits were least common in the community setting (64.4% vs. 76.6% vs. 72.6% with any hospice aide visits in community, assisted living, and nursing home, respectively, p = 0.001). In adjusted models, factors associated with hospice aide visits did not significantly differ by residential settings. Conclusions: Despite staff providing hands-on support in assisted livings and nursing homes, hospice aide visits were more common in residential as opposed to community settings, and factors associated with hospice aide visits were similar among settings. To maximize the potentially positive impact of hospice aides on overall care, additional work is needed to understand when hospice aides are used and how hospice aides collaborate with families and care teams. This will help to ensure that hospice care is appropriately tailored to individual care needs in all residential settings. [ABSTRACT FROM AUTHOR]

To better understand determinants and potential disparities in end of life, we model decedents' place of death with explanatory variables describing familial, social, and economic resources. A retrospective cohort of 204,041 decedents and their family members are drawn from the Utah Population Database family caregiving dataset. Using multinomial regression, we model place of death, categorized as at home, in a hospital, in another location, or unknown. The model includes family relationship variables, sex, race and ethnicity, and a socioeconomic status score, with control variables for age at death and death year. We identified the effect of a family network of multiple caregivers, with 3+ daughters decreasing odds of a hospital death by 17 percent (OR: 0.83 [0.79, 0.87], p < 0.001). Place of death also varies significantly by race and ethnicity, with most nonwhite groups more likely to die in a hospital. These determinants may contribute to disparities in end of life. [ABSTRACT FROM AUTHOR]

IMPORTANCE: Increasing numbers of older, community-dwelling adults have functional impairments that prevent them from leaving their homes. It is uncertain how many people who live in the United States are homebound. OBJECTIVES: To develop measures of the frequency of leaving and ability to leave the home and to use these measures to estimate the size of the homebound population in the US population. DESIGN, SETTING, AND PARTICIPANTS: Cross-sectional data from the National Health and Aging Trends Study collected in 2011 in the contiguous United States. Participants were a nationally representative sample of 7603 noninstitutionalized Medicare beneficiaries 65 years and older. MAIN OUTCOMES AND MEASURES: We defined homebound persons as those who never (completely homebound) or rarely (mostly homebound) left the home in the last month. We defined semihomebound persons as those who only left the home with assistance or had difficulty or needed help leaving the home. We compared demographic, clinical, and health care utilization characteristics across different homebound status categories. RESULTS: In 2011, the prevalence of homebound individuals was 5.6% (95% CI, 5.1%-6.2%), including an estimated 395,422 people who were completely homebound and 1,578,984 people who were mostly homebound. Among semihomebound individuals, the prevalence of those who never left home without personal assistance was 3.3% (95% CI, 2.8%-3.8%), and the prevalence of those who required help or had difficulty was 11.7% (95% CI, 10.9%-12.6%). Completely homebound individuals were more likely to be older (83.2 vs 74.3 years, P

BACKGROUND: The critical need to expand and develop the palliative care evidence base was recently highlighted by the Journal of Palliative Medicines series of articles describing the Research Priorities in Geriatric Palliative Care. The Health and Retirement Study (HRS) is uniquely positioned to address many priority areas of palliative care research. This nationally representative, ongoing, longitudinal study collects detailed survey data every 2 years, including demographics, health and functional characteristics, information on family and caregivers, and personal finances, and also conducts a proxy interview after each subjects death. The HRS can also be linked with Medicare claims data and many other data sources, e.g., U.S. Census, Dartmouth Atlas of Health Care. SETTING: While the HRS offers innumerable research opportunities, these data are complex and limitations do exist. Therefore, we assembled an interdisciplinary group of investigators using the HRS for palliative care research to identify the key palliative care research gaps that may be amenable to study within the HRS and the strengths and weaknesses of the HRS for each of these topic areas. CONCLUSION: In this article we present the work of this group as a potential roadmap for investigators contemplating the use of HRS data for palliative care research.

Background: Family caregivers often play a key role in medical decision-making for patients with cancer. Adult-children account for nearly half of caregivers, but often have less experience with serious illness care and decision-making and face unique relational challenges as the patient's child. Yet little research explores the potentially distinctive decision-making, involvement in decisions, and support needs of adult-child caregivers. Methods: Analysis of survey data of U.S. cancer caregivers conducted by CancerCare® in 2021. Chi-square tests and multivariable regression models assessed whether adult-child and spousal caregivers differed on the type of medical decisions they participated in (e.g., treatment planning, medication management), who made the decision (e.g., caregiver or joint decision), and the resources that informed decisions (e.g., friends and family, education materials). Results: Adult-children (N = 892) were less likely than spouses (N = 314) to participate in treatment planning (beta = -0.41; 95%CI = -0.81,-0.01), but more likely to be involved in decisions about whether to challenge medical authority (e.g., seeking alternative treatment, second opinion) (beta = 0.50; 95%CI = 0.22,0.78). Compared to spouses, adult-children made joint decisions with patients less often (-13.2-percentage points; 95%CI = -19.64,-6.67) and acted as primary decision-maker more frequently (5.60-percentage points; 95%CI = 0.01,10.43). More adult-children than spouses sought help and information regarding decisions from the oncology team (8.42-percentage points; 95%CI = 1.98,14.87) and friends and family (7.91-percentage points; 95%CI = 1.34,14.48). Conclusions: How cancer caregivers and patients are related to each other shapes caregivers' medical decision-making. Adult-children's and spouses' probabilities of participating in and influencing decisions differed for certain types of decisions while adult-children were more likely to seek information and social support regarding decisions. These findings highlight the importance of the patient's and caregiver's relationship type in medical decision-making, suggesting that decision support programs may be more effective if they tailor programs by relationship type. [ABSTRACT FROM AUTHOR]