An Age Group Comparison of Concurrent Hospice Care: A Cost-Effectiveness Analysis.

This study aimed to examine the cost-effectiveness of concurrent hospice care compared with standard care among pediatric patients of different age groups. Using a national Medicaid database of 18 152 pediatric patients enrolled in hospice care between 2011 and 2013, this study calculated and analyzed incremental cost-effectiveness ratios (ICERs) for concurrent care versus standard hospice care for children of 4 age categories: <1 year, 1 to 5 years, 6 to 14 years, and 15 to 20 years. The results indicated that the total Medicaid cost of hospice care was $3229 per patient per month (PPPM; SD, $8709) for those younger than 1 year, $4793 PPPM (SD, $8178) for those aged 1 to 5 years, $5411 PPPM (SD, $7456) for those aged 6 to 14 years, and $5625 PPPM (SD, $11459) for those aged 15 to 20 years. Incremental cost-effectiveness ratio values across all age groups showed that children enrolled in concurrent care had fewer live discharges but at a higher Medicaid cost of care as compared with those enrolled in standard hospice care. Concurrent hospice care was the most cost-effective in the age groups of <1 year and 1 to 5 years, with ICERs equal to $45 (95% confidence interval [CI], $23-$66) and $49 (95% CI, $8-$76), respectively. For the other older age groups, benefits of enrollment in concurrent care came at a much higher cost: in the age group of 6 to 14 years, ICER was equal to $217 (95% CI, $129-$217), and in the age group of 15 to 20 years, it was $107 (95% CI, $82-$183). Concurrent hospice is an effective way to reduce live discharges but has a higher total Medicaid cost than standard hospice care.

A Comparison of Hospice Care Utilization Between Rural and Urban Children in Appalachia: A Geographic Information Systems Analysis.

Long driving times from hospice providers to patients lead to poor quality of care, which may exacerbate in rural and highly isolated areas of Appalachia. This study aimed to investigate geographic patterns of pediatric hospice care across Appalachia. Using person-level Medicaid claims of 1,788 pediatric hospice enrollees who resided in the Appalachian Region between 2011 and 2013. A database of boundaries of Appalachian counties, postal addresses of hospices, and population-weighted county centroids of residences of hospice enrollees driving times from the nearest hospices were calculated. A choropleth map was created to visualize rural/urban differences in receiving hospice care. The average driving time from hospice to child residence was 28 minutes (SD = 26). The longest driving time was in Eastern Kentucky-126 minutes (SD = 32), and the shortest was in South Carolina-11 min (SD = 9.1). The most significant differences in driving times between rural and urban counties were found in Virginia 28 (SD = 7.5) and 5 minutes (SD = 0), respectively, Tennessee-43 (SD = 28) and 8 minutes (SD = 7), respectively; and West Virginia-49 (SD = 30) and 12 minutes (SD = 4), respectively. Many pediatric hospice patients reside in isolated counties with long driving times from the nearest hospices. State-level policies should be developed to reduce driving times from hospice providers.

Factors Associated With Transitions to Adult Care Among Adolescents and Young Adults With Medical Complexity.

Introduction: Thanks to advances in healthcare and technology, adolescents with medical complexity (AMC) and life-threatening conditions are living longer lives and may be expected to transition to adult health care. Yet, current systems and policies of transition care may not reflect their needs, those of their family, or the impact of social determinants of health. The goal of this study was to describe the relationship between social determinants of health and high-quality transition care. Methods: Retrospective cohort study of the 2019-2020 National Survey of Children's Health. The main outcome variable was any support for transition to adult health care. Independent variables were based on a social determinants of health framework. Weighted logistic regression was used to evaluate the association between social determinants and any support for transition to adult health care. Results: Final weighted sample included 444,915 AMC. AMC were distributed across income levels, most commonly lived in the South, and in supportive, resilient communities. More than 50% experienced adverse childhood events and less than 50% had adequate insurance. Less than one third received any transition support from providers; those who did reported time alone with the provider or active management. Social determinants related to missed days of school, community support/family context, and poverty were associated with both receipt and absence of transition care. Conclusion: AMC and their families navigate complex environments and associated stressors. Social determinants of health, particularly economic, community/social, and healthcare exert significant and nuanced influence. Such impacts should be incorporated into transition care.

East Tennessee older women's perceptions of Medicare, Medicaid, and related health policies.

Older women face unique challenges regarding health disparities. This study aims to provide an understanding of older women's perceptions and situated experiences regarding the gendered health disparities they face, which are characterized by the policies related to older women's health and the geopolitical and social norms in which they live. The purpose of this project is to provide policy and decision-makers with insights and a better understanding of older women's experiences and perceptions of the policies that impact their health and healthcare. The data for this study was collected through semi-structured interviews with twelve women in Appalachian East Tennessee. Areas examined include: the women's perceived impact of federal, state, and local policies on the participants, particularly of Medicare and Medicaid; the role of social norming and health narratives, particularly stigmatization, discrimination, and health marginalization of older women; and the role of place and place-based drivers on these areas. This study sought to determine if these factors impact the participants' awareness or lack of awareness of policies related to older women. Findings showed that older women in East Tennessee lacked knowledge of health policies, that older women perceive systemic and individual discrimination in policymaking, clinical care, and health research, and that they perceive that place-based drivers have impacted their access to healthcare. These findings have implications for policymaking and intervention design in co-production with older women in order to mitigate older women's health disparities.

Application of Instrumental Variable Analysis in Pediatric End-of-Life Research: A Case Study.

Instrumental variable analysis (IVA) has been widely used in many fields, including health care, to determine the comparative effectiveness of a treatment, intervention, or policy. However, its application in pediatric end-of-life care research has been limited. This article provides a brief overview of IVA and its assumptions. It illustrates the use of IVA by investigating the comparative effectiveness of concurrent versus standard hospice care for reducing 1-day hospice enrollments. Concurrent hospice care is a relatively recent type of care enabled by the Affordable Care Act in 2010 for children enrolled in the Medicaid program and allows for receiving life-prolonging medical treatment concurrently with hospice care. The IVA was conducted using observational data from 18,152 pediatric patients enrolled in hospice between 2011 and 2013. The results indicated that enrollment in concurrent hospice care reduced 1-day enrollment by 19.3%.

Incremental cost analysis of pediatric hospice care in rural and urban Appalachia.

PURPOSE: Considering growing disparities in health outcomes between rural and urban areas of Appalachia, this study compared the incremental Medicaid costs of pediatric concurrent care (implemented by the Patient Protection and Affordable Care Act) versus standard hospice care. METHODS: Data on 1,788 pediatric hospice patients, from the Appalachian region, collected between 2011 and 2013, were obtained from the Centers for Medicare and Medicaid Services. Incremental per-patient-per-month (PPM) costs of enrollment in concurrent versus standard hospice care were analyzed using multilevel generalized linear models. Increments for analysis were hospice length of stay (LOS). RESULTS: For rural children enrolled in concurrent hospice care, the mean Medicaid cost of hospice care was $3,954 PPPM (95% CI: $3,223-$4,684) versus $1,933 PPPM (95% CI: $1,357-$2,509) for urban. For rural children enrolled in standard hospice care, the mean Medicaid cost was $2,889 PPPM (95% CI: $2,639-$3,139) versus $1,122 PPPM (95% CI: $980-$1,264) for urban. There were no statistically significant differences in Medicaid costs for LOS of 1 day. However, for LOS between 2 and 14 days, concurrent enrollment decreased total costs for urban children (IC = $-236.9 PPPM, 95% CI: $-421-$-53). For LOS of 15 days or more, concurrent care had higher costs compared to standard care, for both rural (IC = $1,399 PPPM, 95% CI: $92-$2,706) and urban children (IC = $1,867 PPPM, 95% CI: $1,172-$2,363). CONCLUSIONS: The findings revealed that Medicaid costs for concurrent hospice care were highest among children in rural Appalachia. Future research on factors of high costs of rural care is needed.

Social Determinants of Comfort: A New Way of Conceptualizing Pediatric End-of-Life Care.

The social determinants of comfort describe structural conditions that influence whether, to what degree, and in what forms comfort measures are offered to and accepted by people living with serious illness and their families. The notion of social determinants of comfort builds on the well-accepted concept of social determinants of health. Although some guiding palliative care documents begin to address this intersection, deeper understanding and exploration are needed. The goals of this article are to (1) describe and articulate the impact of structural and ecological factors on the comfort children and families can attain near the end of life; (2) describe how to address these factors to support children and families in attaining comfort, and maybe even flourish, at end of life; and (3) provide an agenda for research that addresses how palliative care research can advance health equity and how a focus on equity can advance palliative care science. A variety of inequities reinforce social vulnerability and disadvantage throughout the life span and can have profound effects on children, particularly children with serious illness or at the end of life. Ethical care for these children requires recognition of the social determinants of comfort.

A Narrative Review of Pediatric Respite Care Initiatives in the United States.

Families of children receiving palliative care depict lack of respite services as a top unmet need. Although the benefits of access to respite services are notable, little is known on a state-by-state basis about respite provision or funding. The study objective was to conduct a national evaluation of pediatric respite care programs to identify and describe how states provide and fund respite care for children. The study approach adhered to the Scale for the Assessment of Narrative Review Articles quality standards using multiple data sources including engagement with the existing literature, content analyses of public-facing websites, and conversations with 40 stakeholders from 15 states. States offered respite services in a variety of ways: Medicaid waivers used to fund respite care, state-funded programs that provide respite, and philanthropy-based respite facilities. This narrative review revealed the creativity involved in different settings to improve respite access, staffing, and reimbursement. Suggestions to address the unmet respite needs of families included establishing a respite home, improving Medicaid reimbursement, expanding Medicaid waiver eligibility, providing a respite benefit through Medicaid, implementing nursing workforce initiatives, and centralizing staffing databases.

Pediatric Concurrent Hospice Care: Cost Implications of a Hybrid Payment Model.

BACKGROUND: Implementation of concurrent hospice care led to a new hybrid payment model that combines hospice payments with payments for non-hospice medical care. Little is known about the cost implications of this new hybrid payment model. OBJECTIVE: The purpose was to identify costs and compare concurrent care and standard hospice care costs by estimating the average incremental Medicaid cost of care over time. METHODS: Using national Medicaid data of 18 147 hospice children and a multilevel generalized linear model, we calculated the incremental costs of receiving concurrent vs standard hospice care. We used the total cost of care over the last year of life. Increments for the analysis were hospice length of stay, stratified to 1 day, 2-14 days, and 15 + days. RESULTS: Overall, compared to standard hospice care, enrollment in concurrent hospice care was significantly associated with an increase in outpatient care and prescription drug costs. For a stay of 1 day, concurrent hospice care decreased inpatient costs and increased costs of prescription drugs. For stays between 2 and 14 days, concurrent hospice decreased total costs and inpatient costs, but increased prescription drug costs. With a hospice stay of 15 + days, concurrent hospice had significantly higher costs across all measures, including total costs, inpatient costs, outpatient costs, and prescription drug costs. CONCLUSION: This study provides critical insight into incremental costs of receiving concurrent vs standard hospice care. More research is needed to understand how concurrent hospice lengthy hospice stays are associated with increases of costs.

Unraveling EPSDT and Pediatric Hospice Care: An Exploratory Policy Analysis.

Background: Medicaid is the most common of health care benefits for children at end of life. Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) presents a complex policy scenario for children enrolled in the Medicaid hospice benefit, and specifically concurrent hospice care. Objective: The study purpose was to identify policy guidance on EPSDT and pediatric hospice care from state Medicaid documents. Methods: We conducted a descriptive exploratory study, using state-level Medicaid hospice documents. Manuals, policy transmittals, provider memos, policy updates, and other related documents were searched from 50 states and the District of Columbia. We created a comprehensive data extraction tool that enabled us to identify EPSDT-specific information. The appraisal of the documents was conducted under 3 main a priori themes: definitions, function, and administration. Results: Eleven states included EPSDT in their hospice documentation. Definitions for concurrent care and palliative care were sparse and inconsistent. Four states defined medically necessary criterion. Several states did not integrate EPSDT into the hospice or concurrent care benefit, while EPSDT functioned as part of the Medicaid hospice benefit in 3 states and another 4 included it in their concurrent hospice care program. Among all the states, procedures for EPSDT program administration varied widely, including care coordination and payment. Conclusion: We found significant variation in state documents on EPSDT and pediatric hospice care. Clear guidelines and consistent standards regarding EPSDT services and how they interface with hospice, concurrent hospice care, and palliative care would improve care for children and families.

Effectiveness of Pediatric Concurrent Hospice Care to Improve Continuity of Care.

BACKGROUND: The 2010 Patient Protection and Affordable Care Act (ACA) mandated landmark hospice care legislation for children at end of life. Little is known about the impact of pediatric concurrent hospice care. OBJECTIVE: The purpose of this study was to examine the effect of pediatric concurrent vs standard hospice care on end-of-life care continuity among Medicaid beneficiaries. METHODS: Using national Medicaid data, we conducted a quasi-experimental designed study to estimate the effect of concurrent vs standard hospice care to improve end-of-life care continuity for children. Care continuity (i.e., hospice length of stay, hospice disenrollment, emergency room transition, and inpatient transition) was measured via claims data. Exposures were concurrent hospice vs standard hospice care. Using instrumental variable analysis, the effectiveness of exposures on care continuity was compared. RESULTS: Concurrent hospice care affected care continuity. It resulted in longer lengths of stays in hospice (ß = 2.76, P < .001) and reduced hospice live discharges (ß = -2.80, P < .05), compared to standard hospice care. Concurrent care was not effective at reducing emergency room (ß = 2.09, P < .001) or inpatient care (ß = .007, P < .05) transitions during hospice enrollment. CONCLUSION: Our study provides critical insight into the quality of care delivered for children at end of life. These findings have policy implications.

Evaluating the cost-effectiveness of pediatric concurrent versus standard hospice care.

Using a sample of 18,152 pediatric hospice patients, this study assessed the cost-effectiveness of concurrent care over standard hospice care. Analysis of incremental cost-effectiveness ratios with bootstrapping simulations showed that concurrent care was more effective but at a higher cost.

Patterns of Health Care Services During Pediatric Concurrent Hospice Care: A National Study.

BACKGROUND: Children at end of life have unique and complex care needs. Although there is increasing evidence about pediatric concurrent hospice care, the health care services received while in hospice have not received sufficient attention. OBJECTIVES: To examine the health care services, unique clusters of health care services, and characteristics of the children in the clusters. METHODS: Multiple data sources were used including national Medicaid claims data. Children under 21years in pediatric concurrent hospice care were included. Using Medicaid categories assigned to claims, health care services were distributed across 20 categories. Latent class analysis was used to identify clusters of health care services. Demographic profiles of the clusters were created. RESULTS: The 6,243 children in the study generated approximately 500,0000 non-hospice, health care service claims while enrolled in hospice care. We identified 3 unique classes of health care services use: low (61.1%), moderate (18.1%), and high (20.8%) intensity. The children in the 3 classes exhibited unique demographic profiles. CONCLUSIONS: Health care services cluster together in unique fashion with distinct patterns among children in concurrent hospice care. The findings suggest that concurrent hospice care is not a 1-size-fit all solution for children. Concurrent hospice care may be customized and require attention to care coordination to ensure high-quality care.

A National Study to Compare Effective Management of Constipation in Children Receiving Concurrent Versus Standard Hospice Care.

Constipation is a distressing and uncomfortable symptom children experience at end of life. There is a gap in knowledge about how different approaches to hospice care delivery might improve pediatric symptom management of constipation. The purpose of this study was to evaluate the effectiveness of pediatric concurrent hospice versus standard hospice care to manage constipation. Medicaid data (2011-2013) were analyzed. Children who were younger than 21 years enrolled in hospice care and had a hospice enrollment between January 1, 2011, and December 31, 2013, were included. Instrumental variable analysis was used to test the effectiveness of concurrent versus standard hospice care. Among the 18 152 children, approximately 14% of participants were diagnosed or treated for constipation from a nonhospice provider during hospice enrollment. A higher proportion of children received nonhospice care for constipation in concurrent hospice care, compared with standard hospice (19.5% vs 13.2%), although this was not significant (ß = .22, P < .05) after adjusting for covariates. The findings demonstrated that concurrent care was no more effective than standard hospice care in managing pediatric constipation. Hospice and nonhospice providers may be doing a sufficient job ordering bowel regimens before constipation becomes a serious problem for children at end of life.

Multimorbidity and healthcare utilization among Black Americans: A cross-sectional study.

AIM: Racial disparities between multimorbidity presence and healthcare utilization are present within the United States, but less is known about the relationship between multimorbidity presence and healthcare utilization among Black Americans. This study was conducted to examine the relationship between multimorbidity and healthcare utilization among Black Americans. DESIGN: Cross-sectional study. METHODS: This study (n = 425, 57% female) used adult level data from the 2012-2013 Connecticut Health Care Survey. RESULTS: Multivariate logistic regressions indicated that multimorbidity presence predicted a doctor and a specialist visit, but not a dentist visit. CONCLUSION: This study identified multimorbidity presence as a predictor for healthcare utilization, but further research is necessary to understand healthcare utilization experiences among Black Americans with multimorbidity to assess the quality of care. Appropriate measures should also be considered to increase access to dental care for Black Americans with multimorbidity.

Defining Rurality in Hospice Research: Evaluation of Common Measures.

Inconsistency in identifying rural hospices has biased research findings and policy analysis. The purpose of this study was to conduct a comprehensive evaluation of eight rural-urban classifications against the gold standard of the Office of Budget and Management (OMB) to determine the utility of alternative measures in hospice research. These classifications included: Urban-Rural Classification Scheme for Counties (URCSC), Urban Influence Codes (UIC), Rural-Urban Continuum Code (RUCC), Federal Office of Rural Health Policy (FORHP), Index of Relative Rurality (IRR), the U.S. Census Bureau, Rural-Urban Commuting Area codes (RUCA), and Frontier and Remote (FAR). The last and the U.S. Census Bureau classified the smallest number of hospices; URCSC, UIC, and RUCC were indistinguishable from the OMB; and RUCA, IRR, and FORHP classified as rural the largest number of hospices. The latter three classifications also had good agreement with the OMB and therefore can be recommended for use instead of the OMB.

Changing Pediatric Hospice and Palliative Care Through Medicaid Partnerships.

Since its inception in 2010, the Concurrent Care for Children Provision of the Affordable Care Act has enabled seriously ill pediatric patients and their families to access comprehensive, supportive hospice services while simultaneously receiving ongoing treatment-directed therapies. Although this groundbreaking federal legislation has resulted in improvements in care for vulnerable pediatric patients, the implementation of the law has varied from state to state through Medicaid programming. The pediatric professional community is called to consider how Medicaid services can more effectively be delivered by leveraging legislative mandates and collaborative relationships between clinicians, Medicaid administrators, and policy makers. In this article, we examine ways concurrent care has been executed in 3 different states and how key stakeholders in care for children with serious illness advocated to ensure effective implementation of the legislation. The lessons learned in working with state Medicaid programs are applicable to any advocacy issue impacting children and families .

Differences in characteristics of children with cancer who receive standard versus concurrent hospice care.

BACKGROUND: The provision of Section 2302 of the 2010 Patient Protection and Affordable Care Act (ACA) allowed pediatric patients who are enrolled in Medicaid to receive hospice care concurrently with curative treatment (i.e., concurrent hospice care). Because it is a relatively new model of care and very little is known about the characteristics of children with cancer who receive it, the purpose of the current study was to compare demographic, health, and community characteristics of children who received standard hospice care versus concurrent hospice care. PROCEDURE: This study was a retrospective, comparison study with national Medicaid files provided by the Center for Medicare and Medicaid Services (CMS). The sample included 1685 pediatric patients under the age of 20 who were diagnosed with cancer, were enrolled in hospice between 2011 and 2013, and received standard hospice care (n = 1008) or concurrent hospice care (n = 655). RESULTS: Children of non-Hispanic White race with multiple complex chronic conditions, mental/behavioral health problems technology dependence, and brain and orbital tumors were more likely to be enrolled in concurrent care than in standard hospice care. The proportion of children enrolled in concurrent care versus standard hospice care was larger in rural areas, low-income communities, and in the Southern states. CONCLUSIONS: The enhanced uptake of concurrent care by traditionally underserved populations is promising. Concurrent hospice care, which allows for continued medical treatment and hospice care, could enhance access to hospice within these populations by offering a more blended model of care.

A National Profile of Children Receiving Pediatric Concurrent Hospice Care, 2011 to 2013.

When the 2010 Patient Protection and Affordable Care Act (ACA) was passed, it fundamentally changed end-of-life care for children. Concurrent Care for Children (ACA, section 2302) enables Medicaid/Children's Health Insurance Program children with a prognosis of 6 months to live to use hospice care while continuing treatment for their terminal illness. Although ACA, section 2302, was enacted a decade ago, little is known about these children. The purpose of this study was to generate the first-ever national profile of children enrolled in concurrent hospice care. Using data from multiple sources, including US Medicaid data files from 2011 to 2013, a descriptive analysis of the demographic, community, hospice, and clinical characteristics of children receiving concurrent hospice care was conducted. The analysis revealed that the national sample was extremely medically complex, even for children at end of life. They received care within a complicated system involving primary care providers, hospices, and hospitals. These findings have clinical and care coordination implications for hospice nurses.