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1.
Demography ; 61(3): 829-847, 2024 Jun 01.
Article in English | MEDLINE | ID: mdl-38785364

ABSTRACT

A growing proportion of individuals adopt family caregiving roles. Family caregivers are the primary providers of long-term care in the United States yet limited federal policy supports exist, despite the known negative impacts of caregiving. There is also limited information about the prevalence of youth/young adult caregivers and the impacts of caregiving at formative ages in the United States. Our objective is to estimate the prevalence of youth caregivers and examine the association of caregiving with educational investments. We use the American Time Use Survey (2013-2019) to identify and describe youth caregivers (aged 15-18) and young adult caregivers (aged 19-22) and compare them with non-caregiving peers. We estimate that there are approximately 1,623,000 youth caregivers and 1,986,000 young adult caregivers, corresponding to 9.2% and 12.7% of these age groups, respectively. However, there is a wide range in the estimated prevalence per year, from approximately 364,000 to 2.8 million youth caregivers and from 353,000 to 2.2 million young adult caregivers, depending on caregiver definition. Unlike adult caregivers, we find that young men and women were nearly equally likely to provide care. We also find that non-White individuals are disproportionately represented as youth caregivers. Compared with non-caregiving peers, both youth and young adult caregivers are less likely to be enrolled in school and, among those enrolled in school, spend significantly less time on educational activities. Considering the association of caregiving among youth/young adults and education, policies supporting youth and young adult caregivers are critical.


Subject(s)
Caregivers , Educational Status , Humans , Caregivers/statistics & numerical data , Adolescent , United States , Male , Female , Young Adult , Prevalence , Socioeconomic Factors , Sociodemographic Factors , Adult , Age Factors
2.
Med Care ; 60(7): 530-537, 2022 07 01.
Article in English | MEDLINE | ID: mdl-35471419

ABSTRACT

BACKGROUND: Of the 26.4 million family caregivers in the United States, nearly 40% report high levels of emotional strain and subjective burden. However, for the 5 million caregivers of Veterans, little is known about the experiences of caregivers of Veterans during the coronavirus disease 2019 (COVID-19) pandemic. OBJECTIVE: The aim was to examine pandemic-related changes of caregiver well-being outcomes. RESEARCH DESIGN, SUBJECTS, AND MEASURES: Using a pre/post design and longitudinal data of individual caregivers captured pre-COVID-19 and during COVID-19, we use multilevel generalized linear mixed models to examine pandemic-related changes to caregiver well-being (n=903). The primary outcome measures include Zarit Subjective Burden, Center for Epidemiologic Studies Short Depression Scale, perceived financial strain, life chaos, and loneliness. RESULTS: During the pandemic, we observe slight improvements for caregivers across well-being measures except for perceived financial strain. Before the pandemic, we observed that caregivers screened positive for clinically significant caregiver burden and probable depression. While we do not observe worsening indicators of caregiver well-being during the COVID-19 pandemic, the average predicted values of indicators of caregiver well-being remain clinically significant for caregiving subjective burden and depression. CONCLUSIONS: These findings illuminate pandemic-related impacts of caregivers receiving support through the Veterans Affairs (VA) pre-COVID and during the COVID-19 pandemic while caring for a population of frail, older care-recipients with a high burden of mental illness and other chronic conditions. Considering the long-term impacts of the pandemic to increase morbidity and the expected increased demand for caregivers in an aging population, these consistently high levels of distress despite receiving support highlight the need for interventions and policy reform to systematically support caregivers more broadly.


Subject(s)
COVID-19 , Veterans , Aged , COVID-19/epidemiology , Caregivers/psychology , Chronic Disease , Humans , Pandemics , Veterans/psychology
3.
Milbank Q ; 100(3): 854-878, 2022 09.
Article in English | MEDLINE | ID: mdl-35579187

ABSTRACT

Policy Points In the absence of federal policy, states adopted policies to support family caregivers, but availability and level of support varies. We describe, compare, and rank state policies to support family caregivers as aligned with National Academy of Medicine recommendations. Although the landscape of state policies supporting caregivers has improved over time, few states provide financial supports as recommended, and benefit restrictions hinder accessibility for all types of family caregivers. Implementing policies supporting family caregivers will become more critical over time, as the reliance on family caregivers as essential providers of long-term care is only expected to grow as the population ages. CONTEXT: In the United States in 2020, approximately 26 million individuals provided unpaid care to a family member or friend. On average, 60% of caregivers were employed, and they provided 20.4 hours of care per week on top of employment. Although a handful of patchwork laws exist to aid family caregivers, systematic supports, including comprehensive training, respite, and financial support, remain limited. In the absence of federal supports, states have adopted policies to provide assistance, but they vary in availability and level of support provided. Our objectives were to describe, compare, and rank state policies to support family caregivers over time. METHODS: We used publicly available data from the AARP Long-Term Services and Supports State Scorecard, the National Academy for State Health Policy, and Tax Credits for Workers and Families for all 50 states and the District of Columbia (2015-2019). FINDINGS: We found that states had increased supports to family caregivers over this five-year period, although significant variability in adoption and implementation of policies persists. Approximately 20% of states had enacted policies that exceed the federal Family and Medical Leave Act requirements, and 18% offered paid family leave. However, most states had not improved spousal impoverishment protections for Medicaid beneficiaries. For example, from 2016 to 2019, 24% of states provided fewer or no protections, while 71% of states did not improve spousal impoverishment protections over time. Access to training for caregivers varied based on eligibility criteria (e.g., select populations and/or only co-residing caregivers). CONCLUSIONS: Overall, state approaches to support family caregivers vary by eligibility and scope of services. Substantial gaps in support of caregivers, particularly economic supports, persist. Although the landscape of state policies supporting caregivers has improved over time, few states provide financial supports as recommended by the National Academy of Medicine, and benefit restrictions hinder accessibility for all family caregivers.


Subject(s)
Caregivers , Medicaid , Health Policy , Humans , Long-Term Care , National Academies of Science, Engineering, and Medicine, U.S., Health and Medicine Division , United States
4.
Inquiry ; 55: 46958018762914, 2018.
Article in English | MEDLINE | ID: mdl-29591540

ABSTRACT

Family caregivers are an important component of the long-term services and supports (LTSS) system. However, caregiving may have negative consequences for caregiver physical and emotional health. Connecting caregivers to formal short-term home- and community-based services (HCBS), through information resources and referrals, might alleviate family caregiver burden and delay nursing home entry for the patient. The aim of this study was to evaluate the early impact of the Program of Comprehensive Assistance for Family Caregivers (PCAFC) (established by P.L. 111-163 for family caregivers of seriously injured post-9/11 Veterans) on Veteran use of LTSS. A two-cohort pre-post design with a nonequivalent comparison group (treated n = 15 650; comparison n = 8339) was used to (1) examine the association between caregiver enrollment in PCAFC and any VA-purchased or VA-provided LTSS use among Veterans and (2) describe program-related trends in HCBS and institutional LTSS use. The comparison group was an inverse-propensity-score weighted sample of Veterans whose caregivers applied for, but were not accepted into, the program. From baseline through 24 months post application, use of any LTSS ranged from 13.1% to 17.8% for Veterans whose caregivers were enrolled in PCAFC versus from 3.8% to 5.3% for Veterans in the comparison group. Participation in PCAFC was associated with a statistically significant increased use of any LTSS from 1 to 24 months post application (over time odds ratios ranged from 2.71 [95% confidence interval: 2.31-3.17] to 4.86 [3.93-6.02]). Support for family caregivers may enhance utilization of LTSS for Veterans with physical, emotional, and/or cognitive conditions.


Subject(s)
Adaptation, Psychological , Caregivers/psychology , United States Department of Veterans Affairs/organization & administration , Adult , Caregivers/education , Family , Female , Health Status , Humans , Male , Mental Health , Middle Aged , Propensity Score , Respite Care/organization & administration , Retrospective Studies , United States
5.
Adm Policy Ment Health ; 45(4): 550-564, 2018 07.
Article in English | MEDLINE | ID: mdl-29374821

ABSTRACT

The VA Program of Comprehensive Assistance for Family Caregivers (PCAFC) provides landmark support for family caregivers of post-9/11 veterans. This study examines PCAFC support for veterans with and without PTSD and assesses whether program effect differs by PTSD status using a pre-post, non-equivalent, propensity score weighted comparison group design (n = 24,280). Veterans with and without PTSD in PCAFC accessed more mental health, primary, and specialty care services than weighted comparisons. PCAFC participation had stronger effects on access to primary care for veterans with PTSD than for veterans without PTSD. For veterans with PTSD, PCAFC support might enhance health service use.


Subject(s)
Ambulatory Care , Caregivers/education , Family , Health Services Accessibility , Mental Health Services , Primary Health Care , Social Support , Stress Disorders, Post-Traumatic/nursing , Veterans , Adult , Female , Humans , Male , Middle Aged , Propensity Score , Retrospective Studies , Stress Disorders, Post-Traumatic/therapy , United States , United States Department of Veterans Affairs
6.
Med Care Res Rev ; 81(2): 107-121, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38062735

ABSTRACT

Disabled Veterans commonly experience pain. The Program of Comprehensive Assistance for Family Caregivers (PCAFC) provides training, a stipend, and services to family caregivers of eligible Veterans to support their caregiving role. We compared ascertainment of veteran pain and pain treatment through health care encounters and medications (pain indicators) of participants (treated group) and non-participants (comparison group) using inverse probability treatment weights. Modeled results show that the proportion of Veterans with a pain indicator in the first year post-application was higher than that pre-application for both groups. However, the proportion of Veterans with a pain indicator was substantially higher in the treatment group: 76.1% versus 63.9% in the comparison group (p < .001). Over time, the proportion of Veterans with any pain indicator fell and group differences lessened. However, differences persisted through 8 years post-application (p < .001). PCAFC caregivers appear to help Veterans engage in pain treatment at higher rates than caregivers not in PCAFC.


Subject(s)
Disabled Persons , Veterans , Humans , Caregivers , Health Services , Pain
7.
JAMA Netw Open ; 6(3): e230640, 2023 03 01.
Article in English | MEDLINE | ID: mdl-36857055

ABSTRACT

Importance: Nursing homes play a vital role in providing postacute and long-term care for individuals whose needs cannot be met in the home or community. Whether the supply of nursing home beds and, specifically, the supply of high-quality beds has kept pace with the growth of the older adult population is unknown. Objective: To describe changes in the supply of population-adjusted nursing home beds from 2011 to 2019. Design, Setting, and Participants: This cross-sectional study examines changes in the population-adjusted supply of nursing home beds across all US counties from 2011 to 2019 and describes county and nursing home characteristics where the supply of nursing home beds has increased vs decreased. Main Outcomes and Measures: Number of nursing home beds adjusted per 10 000 adults aged 65 years and older. Results: The population-adjusted supply of nursing home beds declined from 2011 to 2019 for 86.4% of US counties, by a mean (SD) of 129.9 (123.8) beds per 10 000 adults aged 65 years or older per county from a baseline mean (SD) of 552.5 (274.4) beds per 10 000 adults aged 65 years or older per county in 2011. The share of beds that were high quality (4- or 5-star ratings) also declined, which was driven by a small number of counties where nursing home bed supply increased due to a proliferation of lower-quality beds. Simultaneously, metropolitan counties with declining numbers of nursing home beds also experienced declining number of senior housing residential beds (-11.3 [54.6] beds per 10 000 adults aged 65 years or older per county from a baseline mean [SD] of 354.8 [222.3]). Conclusions and Relevance: The findings of this cross-sectional study suggest that the supply of nursing home beds, specifically high-quality nursing home beds, and senior residential housing beds have not kept pace with the demographics of an aging population. Understanding the supply of high-quality nursing home beds and associated geographic variation can inform targeted policies to best support older adults requiring nursing home care.


Subject(s)
Nursing Homes , Skilled Nursing Facilities , Humans , Aged , Cross-Sectional Studies , Homes for the Aged , Long-Term Care
8.
Med Care Res Rev ; 80(1): 101-108, 2023 02.
Article in English | MEDLINE | ID: mdl-35787031

ABSTRACT

Older adults needing assistance with activities of daily living can receive support in various settings. Senior housing communities, such as independent living, assisted living, and continuing care retirement communities, are an increasingly popular option for adults not requiring nursing home-level care. However, limited research exists due to a dearth of data on these types of communities. We use a proprietary data set to describe the market of private pay senior housing and community-level characteristics in 140 metropolitan statistical areas, from 2015 to 2019. Although the number of senior housing communities increased substantially, the supply of senior housing options supporting the continuum of care has not necessarily kept up with population growth. Describing the supply of senior housing communities across the spectrum of levels of care provides a more complete description of the formal noninstitutional long-term care supply among the 140 most populated metropolitan statistical areas.


Subject(s)
Activities of Daily Living , Homes for the Aged , Humans , United States , Aged , Independent Living , Housing
9.
J Am Geriatr Soc ; 71(9): 2865-2870, 2023 09.
Article in English | MEDLINE | ID: mdl-37081828

ABSTRACT

BACKGROUND: As federal and state policies rebalance long-term care from institutional settings to home- and community-based settings, reliance on formal (paid) and family (unpaid) caregivers for support at home nationally has increased in recent years. Yet, it is unknown if use of formal and family care varies by rurality. METHODS: Using the Health and Retirement Study, we describe patterns in receipt of combinations of formal and family home care and self-reported expectation of nursing home use by rurality among community-dwelling adults aged 65+ with functional limitations from 2004 to 2016. RESULTS: Older adults residing in rural areas are more likely to receive any family care than those in urban areas. From 2004 to 2016, a higher proportion of older adults in rural areas receive care from family caregivers exclusively while a lower proportion receive care from formal caregivers exclusively. When examining older adults in urban areas, we find the opposite - a higher proportion of urban adults rely exclusively on formal care and a lower proportion rely exclusively on family care in 2016 compared to 2004. CONCLUSION: We find that national estimates of sources of caregiving and their changes over time mask significant heterogeneity in uptake by rurality. Understanding how older adults in rural areas are, or are not, receiving home-based care compared to their urban peers and how these patterns are changing over time is the first step to informing supports for family and formal caregivers.


Subject(s)
Disabled Persons , Home Care Services , Humans , Aged , Caregivers , Independent Living , Skilled Nursing Facilities , Family
10.
PLoS One ; 18(5): e0282071, 2023.
Article in English | MEDLINE | ID: mdl-37172031

ABSTRACT

INTRODUCTION/OBJECTIVE: Alzheimer's Disease and Other Related Dementias (AD/ADRD) leads to frequent emergency department (ED) and inpatient use. Mental health symptoms among persons with AD/ADRD increases cognitive and functional disabilities and could contribute to these high rates of intensive health care use. The objective of this paper is to assess the relationship of mental illness on 12-month patterns in hospitalization and ED use among Veterans aged 65 and over with a new AD/ADRD diagnosis. METHODS: We used an existing dataset of administrative electronic health record data of Veterans with AD/ADRD from the US Veterans Health Administration linked with Medicare claims data from 2011-2015. We use multivariable logistic regression to examine the association between no pre-existing mental illness, pre-existing mental illness (e.g., major depressive disorder, generalized anxiety disorder, or post-traumatic stress disorder), and pre-existing severe mental illness-or SMI-(e.g., bipolar disorder, major depressive disorder with psychosis, or schizophrenia) and 12- month ED and hospitalization use and readmissions among Veterans who had an initial hospitalization visit. We estimated predicted probabilities, differential effect, and associated 95% confidence intervals. RESULTS: In our sample, 1.4% had SMI and 11% had non-SMI mental illness. The unadjusted percentage with inpatient and ED use was higher among Veterans with SMI (34% and 26%, respectively) and Veterans with non-SMI mental illness (20%, 16%) compared with Veterans without pre-existing mental illness (12%, 9%). Compared to individuals with no pre-existing mental illness, having a pre-existing mental illness (1.27 percentage points, 95% CI: 0.76, 1.78) and a pre-existing SMI (7.17 percentage points, 95% CI: 5.66, 8.69) were both associated with an increased likelihood of ED use. The same pattern was observed for any inpatient use (mental illness 2.18, 95% CI: 1.59, 2.77; SMI 9.91, 95% CI: 8.21, 11.61). Only pre-existing SMI was associated higher hospitalization readmission. DISCUSSION: Pre-existing mental illness increases use of high cost, intensive health care and this association is higher of more severe mental health conditions. We also show that pre-existing mental illness exerts a unique influence, above and beyond other comorbidities, such as diabetes, on ED and inpatient visits. More needs to be done to increase recognition of the unique risks of this combination of health conditions and encourage strategies to address them. Developing, testing, and implementing comprehensive strategies that address the intersection of ADRD and mental illness is promising approach that requires more focused attention.


Subject(s)
Alzheimer Disease , Depressive Disorder, Major , Mental Disorders , Stress Disorders, Post-Traumatic , Veterans , Aged , Humans , United States/epidemiology , Alzheimer Disease/complications , Alzheimer Disease/epidemiology , Veterans/psychology , Medicare , Mental Disorders/complications , Mental Disorders/epidemiology , Mental Disorders/psychology , Stress Disorders, Post-Traumatic/epidemiology
11.
Health Serv Res ; 58(1): 140-153, 2023 02.
Article in English | MEDLINE | ID: mdl-35848763

ABSTRACT

OBJECTIVE: To estimate the association of the Veterans Health Administration (VHA) Program of Comprehensive Assistance for Family Caregivers (PCAFC) implemented in 2011 with caregiver health and health care use. DATA SOURCES: VHA claims and electronic health records from May 2009 to May 2018. STUDY DESIGN: Using a retrospective, pre-post study design with inverse probability of treatment weights to address selection into treatment, we examine the association of PCAFC on caregivers who are veterans: (1) outpatient primary, specialty, and mental health care visits; (2) probability of uncontrolled hypertension and anxiety/depression; and (3) VHA health care costs. We compare outcomes for caregivers approved for PCAFC (treatment) to caregivers denied PCAFC (comparison). DATA COLLECTION/EXTRACTION METHODS: Not applicable. PRINCIPAL FINDINGS: In the year pre-application, we observe similar probabilities of having any VHA primary care (~36%), VHA specialty care (~24%), and VHA or VHA-purchased mental health care (~22%) for treatment and comparison caregivers. In the year post-application, treated caregivers had a 5.89 percentage point larger probability of any outpatient VHA primary care (p = 0.002) and 4.34 percentage points larger probability of any outpatient mental health care use (p = 0.014). Post-application, probabilities of having uncontrolled hypertension or diagnosed anxiety/depression were higher for both treated and comparison groups. In the second year post-application, treated caregivers had a 1.88 percentage point larger probability of uncontrolled hypertension (p = 0.019) and 4.68 percentage points larger probability of diagnosed anxiety/depression (predicted probabilities: treated = 0.30; comparison = 0.25; p = 0.005). We find no evidence of differences in VHA total costs by PCAFC status. CONCLUSIONS: Our findings that PCAFC enrollment is associated with increased health care diagnosis and service use may reflect improved access for previously unmet needs in the population of veteran caregivers for veterans in PCAFC. The costs and value of these increases can be weighed against other effects of the program to inform national policies supporting caregivers.


Subject(s)
Caregivers , Veterans , United States , Humans , Caregivers/psychology , Retrospective Studies , United States Department of Veterans Affairs , Health Care Costs , Veterans/psychology
12.
J Cancer Surviv ; 2023 Oct 12.
Article in English | MEDLINE | ID: mdl-37823982

ABSTRACT

PURPOSE: To form a multifaceted picture of family caregiver economic costs in advanced cancer. METHODS: A multi-site cohort study collected prospective longitudinal data from caregivers of patients with advanced solid tumor cancers. Caregiver survey and out-of-pocket (OOP) receipt data were collected biweekly in-person for up to 24 weeks. Economic cost measures attributed to caregiving were as follows: amount of OOP costs, debt accrual, perceived economic situation, and working for pay. Descriptive analysis illustrates economic outcomes over time. Generalized linear mixed effects models asses the association of objective burden and economic outcomes, controlling for subjective burden and other factors. Objective burden is number of activities and instrumental activities of daily living (ADL/IADL) tasks, all caregiving tasks, and amount of time spent caregiving over 24 h. RESULTS: One hundred ninety-eight caregivers, 41% identifying as Black, were followed for a mean period of 16 weeks. Median 2-week out-of-pocket costs were $111. One-third of caregivers incurred debt to care for the patient and 24% reported being in an adverse economic situation. Whereas 49.5% reported working at study visit 1, 28.6% of caregivers at the last study visit reported working. In adjusted analysis, a higher number of caregiving tasks overall and ADL/IADL tasks specifically were associated with lower out-of-pocket expenses, a lower likelihood of working, and a higher likelihood of incurring debt and reporting an adverse economic situation. CONCLUSIONS: Most caregivers of cancer patients with advanced stage disease experienced direct and indirect economic costs. IMPLICATIONS FOR CANCER SURVIVORS: Results support the need to find solutions to lessen economic costs for caregivers of persons with advanced cancer.

13.
Am J Manag Care ; 28(8): e289-e295, 2022 08 01.
Article in English | MEDLINE | ID: mdl-35981129

ABSTRACT

OBJECTIVES: The Department of Veterans Affairs (VA) Program of Comprehensive Assistance for Family Caregivers (PCAFC) is a clinical program providing training, a monthly stipend, and other services to caregivers of qualifying post-9/11 veterans with service-related injuries. Veteran-caregiver discharge from the program occurs when veteran recovery is achieved, participation is no longer in the veteran's best interest, or caregiving ceases. Public scrutiny about potentially inappropriate discharges resulted in a nationwide freeze on all discharges. PCAFC expanded to pre-9/11 veterans in October 2020; thus, lessons learned can continue to inform the expanded program. We pursued 3 objectives: (1) describe the discharge rate, reasons for discharge, and veteran and caregiver characteristics by discharge status; (2) identify factors associated with discharge from PCAFC nationally; and (3) characterize network variation in discharge predictors. STUDY DESIGN: Retrospective observational study using VA administrative data from fiscal year (FY) 2011 to FY 2017. METHODS: Using multivariable Cox proportional hazards regression, we examined factors associated with PCAFC discharge among veterans and caregivers enrolled in PCAFC during FY 2011 to FY 2016. RESULTS: A total of 40.5% of all participants were discharged. Nonspouse caregivers and those applying in later years had the highest rates of discharge; spouse caregivers and those applying in earlier years had the lowest rates of discharge. In 4 of 18 networks, caregivers of Black veterans faced higher rates of discharge compared with caregivers of White veterans, and in 1 network, they faced lower rates of discharge. Substantial variability in rates of discharge was also observed across Veterans Integrated Service Networks. CONCLUSIONS: Training on clinically appropriate discharge criteria could improve practice and increase equity.


Subject(s)
Caregivers , Veterans , Caregivers/education , Humans , Patient Discharge , Retrospective Studies , United States , United States Department of Veterans Affairs
14.
J Palliat Med ; 24(12): 1833-1839, 2021 12.
Article in English | MEDLINE | ID: mdl-34061644

ABSTRACT

Background: Despite recent growth in access to specialty palliative care (PC) services, awareness of PC by patients and caregivers is limited and misconceptions about PC persist. Identifying gaps in PC knowledge may help inform initiatives that seek to reduce inequities in access to PC in rural areas. Objective: We compared knowledge of PC in metropolitan and nonmetropolitan areas of the United States using a nationally representative sample of U.S. adults. Design: We used data from the 2018 Health Information National Trends Survey (HINTS) 5 Cycle 2 to compare prevalence and predictors of PC knowledge and misconceptions in nonmetropolitan and metropolitan areas as defined by the 2013 Urban-Rural Classification (URC) Scheme for Counties. We estimated the association between nonmetro status and knowledge of PC, adjusted for respondent characteristics, using multivariable logistic regression. Results: More respondents reported that they had never heard of PC in nonmetro (78.8%) than metro (70.1%) areas (p < 0.05). Controlling for other factors, nonmetro residence was associated with a 41% lower odds of PC knowledge (odds ratio [OR] = 0.59; 95% confidence interval [CI] = 0.37-0.94), and Hispanic respondents also demonstrated significantly lower odds of PC knowledge conditional on rural status (OR = 0.47; CI = 0.27-0.83). Misconceptions about PC were high in both metro and nonmetro areas. Conclusion: Awareness of PC was lower in rural and micropolitan areas compared with metropolitan areas, suggesting the need for tailored educational strategies. The reduced awareness of PC among Hispanic respondents regardless of rural status raises concerns about equitable access to PC services for this population.


Subject(s)
Hospice and Palliative Care Nursing , Palliative Care , Adult , Humans , Prevalence , Rural Population , United States , Urban Population
15.
J Am Med Dir Assoc ; 22(5): 955-959.e3, 2021 05.
Article in English | MEDLINE | ID: mdl-33812840

ABSTRACT

OBJECTIVES: In the United States, nursing facility residents comprise fewer than 1% of the population but more than 40% of deaths due to Coronavirus Disease 2019 (COVID-19). Mitigating the enormous risk of COVID-19 to nursing home residents requires adequate data. The widely used Centers for Medicare & Medicaid Services (CMS) COVID-19 Nursing Home Dataset contains 2 derived statistics: Total Resident Confirmed COVID-19 Cases per 1000 Residents and Total Resident COVID-19 Deaths per 1000 Residents. These metrics provide a misleading picture, as facilities report cumulative counts of cases and deaths over different time periods but use a point-in-time measure as proxy for number of residents (number of occupied beds in a week), resulting in inflated statistics. We propose an alternative statistic to better illustrate the burden of COVID-19 cases and deaths across nursing facilities. DESIGN: Retrospective cohort study. SETTING AND PARTICIPANTS: Using the CMS Nursing Home Compare and COVID-19 Nursing Home Datasets, we examined facilities with star ratings and COVID-19 data passing quality assurance checks for each reporting period from May 31 to August 16, 2020 (n = 11,115). METHODS: We derived an alternative measure of the number of COVID-19 cases per 1000 residents using the net change in weekly census. For each measure, we compared predicted number of cases/deaths by overall star rating using negative binomial regression with constant dispersion, controlling for county-level cases per capita and nursing home characteristics. RESULTS: The average number of cases per 1000 estimated residents using our method is lower compared with the metric using occupied beds as proxy for number of residents (44.8 compared with 66.6). We find similar results when examining number of COVID-19 deaths per 1000 residents. CONCLUSIONS AND IMPLICATIONS: Future research should estimate the number of residents served in nursing facilities when comparing COVID-19 cases/deaths in nursing facilities. Identifying appropriate metrics for facility-level comparisons is critical to protecting nursing home residents as the pandemic continues.


Subject(s)
Benchmarking , COVID-19 , Disease Outbreaks , Nursing Homes , Aged , COVID-19/epidemiology , COVID-19/mortality , Humans , Medicare , Retrospective Studies , United States/epidemiology
16.
Health Serv Res ; 56(5): 788-801, 2021 10.
Article in English | MEDLINE | ID: mdl-34173227

ABSTRACT

OBJECTIVE: Between January 2005 and July 2020, 171 rural hospitals closed across the United States. Little is known about the extent that other providers step in to fill the potential reduction in access from a rural hospital closure. The objective of this analysis is to evaluate the trends of Federally Qualified Health Centers (FQHCs) and Rural Health Clinics (RHCs) in rural areas prior to and following hospital closure. DATA SOURCES/STUDY SETTING: We used publicly available data from Centers for Medicare and Medicaid Provider of Services files, Cecil G. Sheps Center rural hospital closures list, and Small Area Income and Poverty Estimates. STUDY DESIGN: We described the trends over time in the number of hospitals, hospital closures, FQHC sites, and RHCs in rural and urban ZIP codes, 2006-2018. We used two-way fixed effects and pooled generalized linear models with a logit link to estimate the probabilities of having any RHC and any FQHC within 10 straight-line miles. DATA COLLECTION/EXTRACTION METHODS: Not applicable. PRINCIPAL FINDINGS: Compared to hospitals that never closed, the predicted probability of having any FQHC within 10 miles increased post closure by 5.95 and 11.57 percentage points at 1 year and 5 years, respectively (p < 0.05). The predicted probability of having any RHC within 10 miles was not significantly different following rural hospital closure. A percentage point increase in poverty rate was associated with a 1.98 and a 1.29 percentage point increase in probabilities of having an FQHC or RHC, respectively (p < 0.001). CONCLUSIONS: In areas previously served by a rural hospital, there is a higher probability of new FQHC service-delivery sites post closure. This suggests that some of the potential reductions in access to essential preventive and diagnostic services may be filled by FQHCs. However, many rural communities may have a persistent unmet need for preventive and therapeutic care.


Subject(s)
Health Facility Closure/trends , Health Services Accessibility/trends , Rural Health Services/trends , Safety-net Providers/trends , Centers for Medicare and Medicaid Services, U.S. , Health Facility Closure/statistics & numerical data , Health Services Accessibility/statistics & numerical data , Humans , Rural Health Services/statistics & numerical data , Safety-net Providers/statistics & numerical data , United States
17.
Health Serv Res ; 55(2): 288-300, 2020 04.
Article in English | MEDLINE | ID: mdl-31989591

ABSTRACT

OBJECTIVE: To examine the effect of rural hospital closures on EMS response time (minutes between dispatch notifying unit and arriving at scene); transport time (minutes between unit leaving the scene and arriving at destination); and total activation time (minutes between 9-1-1 call to responding unit returning to service), as longer EMS times are associated with worse patient outcomes. DATA SOURCES/STUDY SETTING: We use secondary data from the National EMS Information System, Area Health Resource, and Center for Medicare & Medicaid Provider of Service files (2010-2016). STUDY DESIGN: We examined the effects of rural hospital closures on EMS transport times for emergent 9-1-1 calls in rural areas using a pre-post, retrospective cohort study with the matched comparison group using difference-in-difference and quantile regression models. PRINCIPAL FINDINGS: Closures increased mean EMS transport times by 2.6 minutes (P = .09) and total activation time by 7.2 minutes (P = .02), but had no effect on mean response times. We also found closures had heterogeneous effects across the distribution of EMS times, with shorter response times, longer transport times, and median total activation times experiencing larger effects. CONCLUSIONS: Rural hospital closures increased mean transport and total activation times with varying effects across the distribution of EMS response, transport, and total times. These findings illuminate potential barriers to accessing timely emergency services due to closures.


Subject(s)
Emergency Service, Hospital/organization & administration , Emergency Service, Hospital/statistics & numerical data , Health Facility Closure/statistics & numerical data , Health Services Accessibility/organization & administration , Hospitals, Rural/organization & administration , Hospitals, Rural/statistics & numerical data , Time-to-Treatment/statistics & numerical data , Transportation of Patients/organization & administration , Aged , Cohort Studies , Female , Health Services Accessibility/statistics & numerical data , Humans , Male , Middle Aged , Retrospective Studies , Transportation of Patients/statistics & numerical data , United States
18.
J Am Geriatr Soc ; 68(11): 2675-2683, 2020 11.
Article in English | MEDLINE | ID: mdl-32822072

ABSTRACT

BACKGROUND/OBJECTIVES: To describe the caregiving experiences and physical and emotional needs of family members and friends who provide care to veterans with mental, physical, and cognitive comorbidities. DESIGN: Cross-sectional study. SETTING: National telephone surveys administered from 2017 to 2019. PARTICIPANTS: Family caregivers of veterans enrolled in the Veterans Affairs (VA) Program of General Caregiver Support Services between October 2016 and July 2018 who responded to a telephone survey (N = 1,509; response rate = 39%). MEASUREMENTS: We examined caregiver burden, depressive symptoms, financial strain, satisfaction with care, amount and duration of caregiving, life chaos, loneliness, and integration of caregiver with the healthcare team using validated instruments. We also collected caregiver demographic and socioeconomic characteristics and asked caregivers to identify the veteran's condition(s) and provide an assessment of the veteran's functioning. RESULTS: Average caregiver age was 62.2 (standard deviation [SD] = 13.7) and 69.8 (SD = 15.6) for veterans. Among caregivers, 76.7% identified at White, and 79.9% were married to the veteran. Caregivers reported having provided care for an average of 6.4 years and spending on average 9.6 hours per day and 6.6 days per week providing care. Average Zarit Subjective Burden score was 21.8 (SD = 9.4; range = 0-47), which is well above the cutoff for clinically significant burden (>16). Caregivers reported high levels of depressive symptoms; the sample average Center for Epidemiologic Studies Depression 10-item Scale score was 11.5 (SD = 7.1; range = 0-30). Caregivers also reported high levels of loneliness and financial strain. CONCLUSION: Caregivers who care for veterans with trauma-based comorbidities reported intensive caregiving and significant levels of distress, depressive symptoms, and other negative consequences. These caregivers require comprehensive support services including access to health care, financial assistance, and enhanced respite care. Planned expansion of VA caregiver support has the potential to provide positive benefits for this population and serve as a model for caregiver support programs outside the VA health care system.


Subject(s)
Caregiver Burden/psychology , Veterans/statistics & numerical data , Adult , Aged , Aged, 80 and over , Caregiver Burden/economics , Cross-Sectional Studies , Depression/epidemiology , Family/psychology , Female , Humans , Male , Middle Aged , Psychological Distress , Surveys and Questionnaires , United States/epidemiology , United States Department of Veterans Affairs
19.
Health Serv Res ; 55(5): 710-721, 2020 10.
Article in English | MEDLINE | ID: mdl-32621548

ABSTRACT

OBJECTIVES: To examine the effect of the Department of Veterans Affairs' (VA) Program of Comprehensive Assistance for Caregivers (PCAFC) on total VA health care costs for Veterans. DATA SOURCES: VA claims. STUDY DESIGN: Using a pre-post cohort design with nonequivalent control group, we estimated the effect of PCAFC on total VA costs up through 6 years. The treatment group included Veterans (n = 32 394) whose caregivers enrolled in PCAFC. The control group included an inverse probability of treatment weighted sample of Veterans whose caregivers were denied PCAFC enrollment (n = 38 402). DATA EXTRACTION: May 2009-September 2017. PRINCIPAL FINDINGS: Total VA costs pre-PCAFC application date were no different between groups. Veterans in PCAFC were estimated to have $13 227 in VA costs in the first 6 months post-PCAFC application, compared to $10 806 for controls. Estimated VA costs for both groups decreased in the first 3 years with a narrowing, but persistent and significant, difference, through 5.5 years. No significant difference in VA health care costs existed at 6 years, approximately $10 000 each, though confidence intervals reflect significant uncertainty in cost differences at 6 years. CONCLUSIONS: Increased costs arose from increased outpatient costs of participants. Sample composition changes may explain lack of significance in cost differences at 6 years because these costs comprise of early appliers to PCAFC. Examining 10-year costs could elucidate whether there are long-term cost offsets from increased engagement in outpatient care.


Subject(s)
Caregivers/economics , Health Care Costs/statistics & numerical data , Home Care Services/economics , United States Department of Veterans Affairs/economics , United States Department of Veterans Affairs/statistics & numerical data , Adult , Female , Health Status , Hospital Costs/statistics & numerical data , Humans , Insurance Claim Review , Male , Mental Health , Middle Aged , Socioeconomic Factors , United States
20.
Trials ; 21(1): 189, 2020 Feb 14.
Article in English | MEDLINE | ID: mdl-32059687

ABSTRACT

BACKGROUND: Informal caregivers report substantial burden and depressive symptoms which predict higher rates of patient institutionalization. While caregiver education interventions may reduce caregiver distress and decrease the use of long-term institutional care, evidence is mixed. Inconsistent findings across studies may be the result of reporting average treatment effects which do not account for how effects differ by participant characteristics. We apply a machine-learning approach to randomized clinical trial (RCT) data of the Helping Invested Family Members Improve Veteran's Experiences Study (HI-FIVES) intervention to explore how intervention effects vary by caregiver and patient characteristics. METHODS: We used model-based recursive partitioning models. Caregivers of community-residing older adult US veterans with functional or cognitive impairment at a single VA Medical Center site were randomized to receive HI-FIVES (n = 118) vs. usual care (n = 123). The outcomes included cumulative days not in the community and caregiver depressive symptoms assessed at 12 months post intervention. Potential moderating characteristics were: veteran age, caregiver age, caregiver ethnicity and race, relationship satisfaction, caregiver burden, perceived financial strain, caregiver depressive symptoms, and patient risk score. RESULTS: The effect of HI-FIVES on days not at home was moderated by caregiver burden (p < 0.001); treatment effects were higher for caregivers with a Zarit Burden Scale score ≤ 28. Caregivers with lower baseline Center for Epidemiologic Studies Depression Scale (CESD-10) scores (≤ 8) had slightly lower CESD-10 scores at follow-up (p < 0.001). CONCLUSIONS: Family caregiver education interventions may be less beneficial for highly burdened and distressed caregivers; these caregivers may require a more tailored approach that involves assessing caregiver needs and developing personalized approaches. TRIAL REGISTRATION: ClinicalTrials.gov, ID:NCT01777490. Registered on 28 January 2013.


Subject(s)
Caregivers/education , Cognitive Dysfunction/therapy , Depression/prevention & control , Machine Learning , Stress, Psychological/complications , Age Factors , Aged , Aged, 80 and over , Caregivers/psychology , Cognitive Dysfunction/psychology , Data Interpretation, Statistical , Depression/etiology , Depression/psychology , Family/psychology , Female , Follow-Up Studies , Humans , Institutionalization/statistics & numerical data , Long-Term Care/psychology , Male , Middle Aged , Quality of Life , Randomized Controlled Trials as Topic , Stress, Psychological/psychology , Treatment Outcome , Veterans/psychology
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