The Trauma Dyad: The Role of Informal Caregivers for Older Adults After Traumatic Injury.

OBJECTIVE: To investigate the association between higher injury severity and increased informal caregiving received by injured older adults. SUMMARY OF BACKGROUND DATA: Injured older adults experience high rates of functional decline and disability after hospitalization. Little is known about the scope of caregiving received post-discharge, particularly from informal caregivers such as family. METHODS: We used the National Health and Aging Trends Study 2011 to 2018 linked to Medicare claims to identify adults ≥65 with hospital admission for traumatic injury and a National Health and Aging Trends Study interview within 12 months pre- and post-trauma. Injury severity was assessed using the injury severity score (ISS, low 0-9; moderate 10-15; severe 16-75). Patients reported the types and hours of formal and informal help received and any unmet care needs. Multi variable logistic regression models examined the association between ISS and increase in informal caregiving hours after discharge. RESULTS: We identified 430 trauma patients. Most were female (67.7%), non-Hispanic White (83.4%) and half were frail. The most common mechanism of injury was fall (80.8%) and median injury severity was low (ISS = 9). Those reporting receiving help with any activity increased post-trauma (49.0% to 72.4%, P < 0.01), and unmet needs nearly doubled (22.8% to 43.0%, P < 0.01). Patients had a median of 2 caregivers and most (75.6%) were informal, often family members. Median weekly hours of care received pre- versus post-injury increased from 8 to 14 (P < 0.01). ISS did not independently predict increase in caregiving hours; pre-trauma frailty predicted an increase in hours ≥8 per week. CONCLUSIONS: Injured older adults reported high baseline care needs which increased significantly after hospital discharge and were mostly met by informal caregivers. Injury was associated with increased need for assistance and unmet needs regardless of injury severity. These results can help set expectations for caregivers and facilitate post-acute care transitions.

Paid Care for People with Functional Impairment and Serious Illness: Results from the Health and Retirement Study.

BACKGROUND: Paid caregivers (e.g., home health aides) care for individuals living at home with functional impairment and serious illnesses (health conditions with high risk of mortality that impact function and quality of life). OBJECTIVE: To characterize those who receive paid care and identify factors associated with receipt of paid care in the context of serious illness and socioeconomic status. DESIGN: Retrospective cohort study. PARTICIPANTS: Community-dwelling participants ≥ 65 years enrolled in the Health and Retirement Study (HRS) between 1998 and 2018 with new-onset functional impairment (e.g., bathing, dressing) and linked fee-for-service Medicare claims (n = 2521). MAIN MEASURES: Dementia was identified using HRS responses and non-dementia serious illness (e.g., advanced cancer, end-stage renal disease) was identified using Medicare claims. Paid care support was identified using HRS survey report of paid help with functional tasks. KEY RESULTS: While about 27% of the sample received paid care, those with both dementia and non-dementia serious illnesses in addition to functional impairment received the most paid care (41.7% received ≥ 40 h of paid care per week). In multivariable models, those with Medicaid were more likely to receive any paid care (p < 0.001), but those in the highest income quartile received more hours of paid care (p = 0.05) when paid care was present. Those with non-dementia serious illness were more likely to receive any paid care (p < 0.001), but those with dementia received more hours of care (p < 0.001) when paid care was present. CONCLUSIONS: Paid caregivers play a significant role in meeting the care needs of those with functional impairment and serious illness and high paid care hours are common among those with dementia in particular. Future work should explore how paid caregivers can collaborate with families and healthcare teams to improve the health and well-being of the seriously ill throughout the income spectrum.

Health care utilization and costs in the years preceding dementia identification.

INTRODUCTION: There is evidence that health care utilization increases after incident dementia, particularly after dementia diagnosis and toward the end of life; however, less is known about utilization in the years before dementia identification. METHODS: In this retrospective cohort study we obtained data on n = 5547 beneficiaries from the Health and Retirement Study (HRS)-Medicare linked sample (n = 1241 with and n = 4306 without dementia) to compare longitudinal trends in health care costs and utilization in the 6 years preceding dementia identification relative to a confounder-balanced reference group without dementia. RESULTS: We found that persons with dementia had a greater prevalence of outpatient emergency department (ED), inpatient hospital, skilled nursing, and home health use, and total health care costs in the years preceding dementia identification compared to their similar counterparts without dementia across a comparable timespan in later life. CONCLUSIONS: This study provides evidence to suggest greater healthcare burden may exist well before clinical manifestation and identification of dementia. HIGHLIGHTS: Several studies have documented the tremendous healthcare-related costs of living with dementia, particularly toward the end of life. Dementia is a progressive neurodegenerative disease, which, for some, includes a prolonged pre-clinical phase. However, health services research to date has seldom considered the time before incident dementia. This study documents that health care utilization and costs are significantly elevated in the years before incident dementia relative to a demographically-similar comparison group without dementia.

Measuring communication quality in the Neonatal Intensive Care Unit.

BACKGROUND: High quality communication between providers and parents of seriously ill neonatal patients is vital and yet poorly understood. Feudtner summarized five challenges and seven priorities to the study and advancement of pediatric palliative care. Improvement of communication is a priority, while lack of specification and measurement of outcomes relevant to the pediatric population remains a challenge. Specifically, measurement of communication quality in pediatrics, and especially neonatology, is problematic. METHODS: We conducted a focused review of this topic which we hope will serve to support further research. We reviewed the current literature in Pubmed and searched the Palliative Care Research Cooperative (PCRC) instrument library. RESULTS: We found five validated instruments which met our criteria, relied on patient or surrogate report, and were developed to measure quality of communication and/or satisfaction with communication with adult patients or their surrogates. Our Pubmed search yielded 249 unique results, only two of which met our inclusion criteria. CONCLUSION: We conclude that development and exhaustive testing of a validated, comprehensive measure of communication quality for the neonatal population is needed. Without such a measure, it will be difficult to advance the field and achieve high quality prognostic communication for the parents of seriously ill babies. IMPACT: Measurement of communication quality in pediatrics, and especially neonatology, is problematic, understudied, and yet critical to the advancement of the field. There has not been an overview of existing measures of communication quality in the NICU published, nor has there been a comprehensive discussion of this important topic. Our paper provides such an overview and initiates such a discussion. We present a narrative review of existing measures of communication quality in the NICU in order to highlight the need for further study.

Use of hospitals in the New York City Metropolitan Region, by race: how separate? How equal in resources and quality?

BACKGROUND: Although racial and ethnic minorities disproportionately use some hospitals, hospital-based racial and ethnic composition relative to geographic region and its association with quality indicators has not been systematically analyzed. METHODS: We used four race and ethnicity categories: non-Hispanic white (NHW), non-Hispanic black (NHB), Hispanic, and Asian/Pacific Islander/Alaskan Native/American Indian (API/AIAN), as well as a combined non-NHW category, from the 2010 (latest year publicly available) Medicare Institutional Provider & Beneficiary Summary public use file for 84 hospitals in the New York City region. We assessed the relative distribution of race and ethnicity across hospitals grouped at different geographic levels (region, county, hospital referral region [HRR], or hospital service areas [HSA]) using the dissimilarity index. Hospital characteristics included quality star ratings, essential professional services and diagnostic/treatment equipment, bed size, total expenses, and patients with dual Medicare and Medicaid enrollment. We assessed Spearman's rank correlation between hospital-based racial and ethnic composition and quality/structural measures. RESULTS: Dissimilarity Index decreases from region (range 30.3-40.1%) to county (range 13.7-23.5%), HRR (range 10.5-27.5%), and HSA (range 12.0-16.9%) levels. Hospitals with larger non-NHW patients tended to have lower hospital ratings and higher proportions of dually-enrolled patients. They were also more likely to be safety net hospitals and non-federal governmental hospitals. CONCLUSIONS: In the NYC metropolitan region, there is considerable hospital-based racial and ethnic segregation of Medicare patients among non-NHW populations, extending previous research limited to NHB. Availability of data on racial and ethnic composition of hospitals should be made publicly available for researchers and consumers.

Examining variation in state spending on medicaid long-term services and supports for older adults.

State Medicaid programs are the largest source of funding for long-term services and supports (LTSS). We characterized states across quartiles of mean LTSS spending for individuals ≥65 and used the Health and Retirement Study to examine the demographic, functional, and caregiving characteristics across these quartiles. Individuals in states with lower Medicaid spending on LTSS reported more family and friend caregiving hours and were more likely to be from racial and ethnic minority groups. Continued work is needed to improve Medicaid LTSS policy to better support vulnerable populations, particularly in lower quartile states.

Prior Presentations: Abstract accepted for poster presentation at the Presidential Poster Session at the American Geriatrics Society National Conference 2020, Long Beach, CA.

Association of Lifetime TBI and Military Employment with Late Life ADL Functioning: A Population-Based Prospective Cohort Study.

OBJECTIVE: To determine associations of traumatic brain injury (TBI) and military employment with activities of daily living (ADL) in late life. DESIGN: Population-based prospective cohort study with biennial follow-up and censoring at the time of dementia diagnosis. SETTING: Community-based integrated health care delivery system. PARTICIPANTS: Participants (N=4953) were men (n=2066) and women (n=2887) aged ≥65 years who were dementia free. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: ADL difficulties at baseline and accumulation during follow-up. RESULTS: TBI with loss of consciousness (LOC) before the age of 40 years was associated with slightly higher ADL difficulty at baseline for women (rate ratio [RR], 1.44; 95% confidence interval [CI], 1.08-1.93; P=.01). For men, TBI with LOC at any age was associated with greater ADL difficulty at baseline (age <40y: RR, 1.58; 95% CI, 1.20-2.08; P=.001; age ≥40y: RR, 2.14; 95% CI, 1.24-3.68; P=.006). TBI with LOC was not associated with the rate of accumulation of ADL difficulties over time in men or women. There was no evidence of an association between military employment and either outcome, nor of an interaction between military employment and TBI with LOC. Findings were consistent across a variety of sensitivity analyses. CONCLUSIONS: Further investigation into factors underlying greater late life functional impairment among survivors of TBI is warranted.

Latent Class Analysis of Symptom Burden Among Seriously Ill Adults at the End of Life.

BACKGROUND: Serious illness is characterized by high symptom burden that negatively affects quality of life (QOL). Although palliative care research has highlighted symptom burden in seriously ill adults with cancer, symptom burden among those with noncancer serious illness and multiple chronic conditions has been understudied. Latent class analysis is a statistical method that can be used to better understand the relationship between severity of symptom burden and covariates, such as the presence of multiple chronic conditions. Although latent class analysis has been used to highlight subgroups of seriously ill adults with cancer based on symptom clusters, none have incorporated multiple chronic conditions. OBJECTIVES: The objectives of this study were to (a) describe the demographic and baseline characteristics of seriously ill adults at the end of life in a palliative care cohort, (b) identify latent subgroups of seriously ill individuals based on severity of symptom burden, and (c) examine variables associated with latent subgroup membership, such as QOL, functional status, and the presence of multiple chronic conditions. METHODS: A secondary data analysis of a palliative care clinical trial was conducted. The latent class analysis was based on the Edmonton Symptom Assessment System, which measures nine symptoms on a scale of 0-10 (e.g., pain, fatigue, nausea, depression, anxiousness, drowsiness, appetite, well-being, and shortness of breath). Clinically significant cut-points for symptom severity were used to categorize each symptom item in addition to a categorized total score. RESULTS: Three latent subgroups were identified (e.g., low, moderate, and high symptom burden). Lower overall QOL was associated with membership in the moderate and high symptom burden subgroups. Multiple chronic conditions were associated with statistically significant membership in the high symptom burden latent subgroup. Older adults between 65 and 74 years had a lower likelihood of moderate or high symptom burden subgroup membership compared to the low symptom burden class. DISCUSSION: Lower QOL was associated with high symptom burden. Multiple chronic conditions were associated with high symptom burden, which underlines the clinical complexity of serious illness. Palliative care at the end of life for seriously ill adults with high symptom burden must account for the presence of multiple chronic conditions.

Lifetime history of traumatic brain injury is associated with increased loneliness in adults: A US nationally representative study.

BACKGROUND/OBJECTIVES: An estimated 55 million individuals worldwide live with chronic disability associated with traumatic brain injury (TBI), which may include cognitive, behavioral, and social impairments. Reduced participation in social activities is common after TBI; however, few studies have evaluated loneliness among survivors of TBI. The current study aimed to evaluate the association between history of TBI and loneliness and to identify mediators of this association. METHODS/DESIGN: Retrospective cohort study. Nationally representative sample of N = 724 adults over age 50 years (Health and Retirement Study). Loneliness was evaluated using the 11-item Revised University of California Los Angeles (R-UCLA) Loneliness Scale (range 11-33). Lifetime history of TBI evaluated retrospectively using the Ohio State University TBI Identification Method. We included the following covariates: age, sex, race, and education; and mediators: depressive symptoms, number of comorbidities, chronic pain, difficulty with activities of daily living, and social network index. RESULTS: History of TBI was associated with a 1.28-point (95% CI, 0.46-2.11; P < .05; Cohen's D = 0.284) increase in R-UCLA Loneliness Scale scores after covariate adjustment. Individuals with more recent injuries (within 10 years) and multiple lifetime TBIs reported the highest loneliness scores. In the structural equation model, depressive symptoms partially mediated the relationship between TBI and loneliness. All models were adjusted for US population sampling weights. CONCLUSIONS: History of TBI was associated with greater loneliness compared with individuals without TBI in a representative sample of US adults. Managing depressive symptoms and medical consequences of TBI may be a target to ameliorate reporting of loneliness in this population.

Cost analysis of a prospective multi-site cohort study of palliative care consultation teams for adults with advanced cancer: Where do cost-savings come from?

BACKGROUND: Studies report cost-savings from hospital-based palliative care consultation teams compared to usual care only, but drivers of observed differences are unclear. AIM: To analyse cost-differences associated with palliative care consultation teams using two research questions: (Q1) What is the association between early palliative care consultation team intervention, and intensity of services and length of stay, compared to usual care only? (Q2) What is the association between early palliative care consultation team intervention and day-to-day hospital costs, compared to a later intervention? DESIGN: Prospective multi-site cohort study (2007-2011). Patients who received a consultation were placed in the intervention group, those who did not in the comparison group. Intervention group was stratified by timing, and groups were matched using propensity scores. SETTING/PARTICIPANTS: Adults admitted to three US hospitals with advanced cancer. Principle analytic sample contains 863 patients ( nUC = 637; nPC EARLY = 177; nPC LATE = 49) discharged alive. RESULTS: Cost-savings from early palliative care accrue due to both reduced length of stay and reduced intensity of treatment, with an estimated 63% of savings associated with shorter length of stay. A reduction in day-to-day costs is observable in the days immediately following initial consult but does not persist indefinitely. A comparison of early and late palliative care consultation team cost-effects shows negligible difference once the intervention is administered. CONCLUSION: Reduced length of stay is the biggest driver of cost-saving from early consultation for patients with advanced cancer. Patient- and family-centred discussions on goals of care and transition planning initiated by palliative care consultation teams may be at least as important in driving cost-savings as the reduction of unnecessary tests and pharmaceuticals identified by previous studies.

The burden of health care costs for patients with dementia in the last 5 years of life.

BACKGROUND: Common diseases, particularly dementia, have large social costs for the U.S. population. However, less is known about the end-of-life costs of specific diseases and the associated financial risk for individual households. OBJECTIVE: To examine social costs and financial risks faced by Medicare beneficiaries 5 years before death. DESIGN: Retrospective cohort. SETTING: The HRS (Health and Retirement Study). PARTICIPANTS: Medicare fee-for-service beneficiaries, aged 70 years or older, who died between 2005 and 2010 (n = 1702), stratified into 4 groups: persons with a high probability of dementia or those who died because of heart disease, cancer, or other causes. MEASUREMENTS: Total social costs and their components, including Medicare, Medicaid, private insurance, out-of-pocket spending, and informal care, measured over the last 5 years of life; and out-of-pocket spending as a proportion of household wealth. RESULTS: Average total cost per decedent with dementia ($287 038) was significantly greater than that of those who died of heart disease ($175 136), cancer ($173 383), or other causes ($197 286) (P < 0.001). Although Medicare expenditures were similar across groups, average out-of-pocket spending for patients with dementia ($61 522) was 81% higher than that for patients without dementia ($34 068); a similar pattern held for informal care. Out-of-pocket spending for the dementia group (median, $36 919) represented 32% of wealth measured 5 years before death compared with 11% for the nondementia group (P < 0.001). This proportion was greater for black persons (84%), persons with less than a high school education (48%), and unmarried or widowed women (58%). LIMITATION: Imputed Medicaid, private insurance, and informal care costs. CONCLUSION: Health care expenditures among persons with dementia were substantially larger than those for other diseases, and many of the expenses were uncovered (uninsured). This places a large financial burden on families, and these burdens are particularly pronounced among the demographic groups that are least prepared for financial risk. PRIMARY FUNDING SOURCE: National Institute on Aging.

The Myth Regarding the High Cost of End-of-Life Care.

Health care reform debate in the United States is largely focused on the highly concentrated health care costs among a small proportion of the population and policy proposals to identify and target this "high-cost" group. To better understand this population, we conducted an analysis for the Institute of Medicine Committee on Approaching Death using existing national data sets, peer-reviewed literature, and published reports. We estimated that in 2011, among those with the highest costs, only 11% were in their last year of life, and approximately 13% of the $1.6 trillion spent on personal health care costs in the United States was devoted to care of individuals in their last year of life. Public health interventions to reduce health care costs should target those with long-term chronic conditions and functional limitations.

The Prevalence of Cognitive Impairment Among Medicare Beneficiaries Who Use Outpatient Physical Therapy.

OBJECTIVE: The objective of this study was to estimate the prevalence of cognitive impairment (including cognitive impairment no dementia [CIND] and dementia) among Medicare fee-for-service beneficiaries who used outpatient physical therapy and to estimate the prevalence of cognitive impairment by measures that are relevant to rehabilitation practice. METHODS: This cross-sectional analysis included 730 Medicare fee-for-service beneficiaries in the 2016 wave of the Health and Retirement Study with claims for outpatient physical therapy. Cognitive status, our primary variable of interest, was categorized as normal, CIND, or dementia using a validated approach, and population prevalence of cognitive impairment (CIND and dementia) was estimated by sociodemographic variables and Charlson comorbidity index score. Age-, gender- (man/woman), race-/ethnicity-adjusted population prevalence of CIND and dementia were also calculated for walking difficulty severity, presence of significant pain, self-reported fall history, moderate-vigorous physical activity (MVPA) ≤1×/week, and sleep disturbance frequency using multinomial logistic regression. RESULTS: Among Medicare beneficiaries with outpatient physical therapist claims, the prevalence of any cognitive impairment was 20.3% (CIND:15.2%, dementia:5.1%). Cognitive impairment was more prevalent among those who were older, Black, had lower education attainment, or higher Charlson comorbidity index scores. The adjusted population prevalence of cognitive impairment among those who reported difficulty walking across the room was 29.8%, difficulty walking 1 block was 25.9%, difficulty walking several blocks was 20.8%, and no difficulty walking was 16.3%. Additionally, prevalence of cognitive impairment among those with MVPA ≤1×/week was 27.1% and MVPA >1×/week was 14.1%. Cognitive impairment prevalence did not vary by significant pain, self-reported fall history, or sleep disturbance. CONCLUSION: One in 5 older adults who use outpatient physical therapist services have cognitive impairment. Furthermore, cognitive impairment is more common in older physical therapist patients who report worse physical function and less physical activity. IMPACT: Physical therapists should consider cognitive screening for vulnerable older adults to inform tailoring of clinical practice toward a patient's ability to remember and process rehabilitation recommendations.

National Institute on Aging's 50th anniversary: Advancing aging research and the health and well-being of older adults.

The National Institute on Aging (NIA), part of the National Institutes of Health (NIH), was founded in 1974 to support and conduct research on aging and the health and well-being of older adults. Fifty years ago, the concept of studying aging generated much skepticism. Early NIA-funded research findings helped establish the great value of aging research and provided the foundation for significant science advances that have improved our understanding of the aging process, diseases and conditions associated with aging, and the effects of health inequities, as well as the need to promote healthy aging lifestyles. Today, we celebrate the many important contributions to aging research made possible by NIA, as well as opportunities to continue to make meaningful progress. NIA emphasizes that the broad aging research community must continue to increase and expand our collective efforts to recruit and train a diverse next generation of aging researchers.

A randomized controlled trial of a novel home-based palliative care program: A report of a trial that could not be completed.

BACKGROUND: In response to a growing need for accessible, efficient, and effective palliative care services, we designed, implemented, and evaluated a novel palliative care at home (PC@H) model for people with serious illness that is centered around a community health worker, a registered nurse, and a social worker, with an advanced practice nurse and a physician for support. Our objectives were to measure the impact of receipt of PC@H on patient symptoms, quality of life, and healthcare utilization and costs. METHODS: We enrolled 136 patients with serious illness in this parallel, randomized controlled trial. Our primary outcome was change in symptom burden at 6 weeks. Secondary outcomes included change in symptom burden at 3 months, change in quality of life at 6 weeks and 3 months, estimated using a group t-test. In an exploratory aim, we examined the impact of PC@H on healthcare utilization and cost using a generalized linear model. RESULTS: PC@H resulted in a greater improvement in patient symptoms at 6 weeks (1.30 score improvement, n = 37) and 3 months (3.14 score improvement, n = 21) compared with controls. There were no differences in healthcare utilization and costs between the two groups. Unfortunately, due to the COVID-19 pandemic and a loss of funding, the trial was not able to be completed as originally intended. CONCLUSIONS: A palliative care at home model that leverages community health workers, registered nurses, and social workers as the primary deliverers of care may result in improved patient symptoms and quality of life compared with standard care. We did not demonstrate significant differences in healthcare utilization and cost associated with receipt of PC@H, likely due to inability to reach the intended sample size and insufficient statistical power, due to elements beyond the investigators' control such as the COVID-19 public health emergency and changes in grant funding.

Out-of-pocket spending in the last five years of life.

BACKGROUND: A key objective of the Medicare program is to reduce risk of financial catastrophe due to out-of-pocket healthcare expenditures. Yet little is known about cumulative financial risks arising from out-of-pocket healthcare expenditures faced by older adults, particularly near the end of life. DESIGN: Using the nationally representative Health and Retirement Study (HRS) cohort, we conducted retrospective analyses of Medicare beneficiaries' total out-of-pocket healthcare expenditures over the last 5 years of life. PARTICIPANTS: We identified HRS decedents between 2002 and 2008; defined a 5 year study period using each subject's date of death; and excluded those without Medicare coverage at the beginning of this period (n = 3,209). MAIN MEASURES: We examined total out-of-pocket healthcare expenditures in the last 5 years of life and expenditures as a percentage of baseline household assets. We then stratified results by marital status and cause of death. All measurements were adjusted for inflation to 2008 US dollars. RESULTS: Average out-of-pocket expenditures in the 5 years prior to death were $38,688 (95 % Confidence Interval $36,868, $40,508) for individuals, and $51,030 (95 % CI $47,649, $54,412) for couples in which one spouse dies. Spending was highly skewed, with the median and 90th percentile equal to $22,885 and $89,106, respectively, for individuals, and $39,759 and $94,823, respectively, for couples. Overall, 25 % of subjects' expenditures exceeded baseline total household assets, and 43 % of subjects' spending surpassed their non-housing assets. Among those survived by a spouse, 10 % exceeded total baseline assets and 24 % exceeded non-housing assets. By cause of death, average spending ranged from $31,069 for gastrointestinal disease to $66,155 for Alzheimer's disease. CONCLUSION: Despite Medicare coverage, elderly households face considerable financial risk from out-of-pocket healthcare expenses at the end of life. Disease-related differences in this risk complicate efforts to anticipate or plan for health-related expenditures in the last 5 years of life.