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.

Geographic Information Systems Utilization in Pediatric End-of-Life Research: A Scoping Review.

Currently, little is known about how geographic information systems (GIS) has been utilized to study end-of-life care in pediatric populations. The purpose of this review was to collect and examine the existing evidence on how GIS methods have been used in pediatric end-of-life research over the last 20 years. Scoping review method was used to summarize existing evidence and inform research methods and clinical practice was used. The Preferred Items for Systematic Reviews and Meta-Analyses for Scoping Reviews (PRISMA) was utilized. The search resulted in a final set of 17 articles. Most studies created maps for data visualization and used ArcGIS as the primary software for analysis. The scoping review revealed that GIS methodology has been limited to mapping, but that there is a significant opportunity to expand the use of this methodology for pediatric end-of-life care research.

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%.

A National Study of Healthcare Service Patterns at the End of Life Among Children With Cardiac Disease.

BACKGROUND: Heart diseases are one of the leading causes of health-related deaths among children. Concurrent hospice care offers hospice and nonhospice healthcare services simultaneously, but the use of these services by children with cardiac disease has been rarely investigated. OBJECTIVE: The aims of this study were to identify patterns of nonhospice healthcare services used in concurrent hospice care and describe the profile of children with cardiac disease in these clusters. METHODS: This study was a retrospective cohort analysis of Medicaid claims data collected between 2011 and 2013 from 1635 pediatric cardiac patients. The analysis included descriptive statistics and latent class analysis. RESULTS: Children in the sample used more than 314 000 nonhospice healthcare services. The most common services were inpatient hospital procedures, durable medical equipment, and home health. Latent class analysis clustered children into "moderate intensity" (60.0%) and "high intensity" classes (40.0%). Children in "moderate intensity" had dysrhythmias (31.7%), comorbidities (85.0%), mental/behavioral health conditions (55%), and technology dependence (71%). They commonly resided in urban areas (60.1%) in the Northeast (44.4%). The health profile of children in the "high intensity" class included dysrhythmias (39.4%), comorbidities (97.6%), mental/behavioral health conditions (71.5%), and technology dependence (85.8%). These children resided in rural communities (50.7%) in the South (53.1%). CONCLUSIONS: Two patterns of use of nonhospice healthcare services were identified in this study. This information may be used by nurses and other healthcare professionals working in concurrent hospice care to assess the healthcare service needs of children with cardiac conditions at the end of life.

Conceptualizing the Value of Pediatric Concurrent Hospice Care.

Given that pediatric concurrent hospice care has been available for more than a decade, it is appropriate to seek an understanding of the value of this care delivery approach. Value is the cost associated with achieving beneficial health outcomes. In pursuit of this goal, the current literature on pediatric concurrent hospice care was synthesized and used to develop a model to explain its value. Because of its relevance, the Value Assessment Framework was used to conceptualize the value of pediatric concurrent hospice care. This framework gauges the value of a health care service through 2 components: long-term effect and short-term affordability. The framework considers comparative clinical effectiveness, cost-effectiveness, other benefits or disadvantages, contextual considerations, and potential budget impact. Evidence from the literature suggested that the value of concurrent care depended on clinical outcomes evaluated, costs examined, medical services used, care coordinated, context considered, and budget impacted. The literature demonstrated that pediatric concurrent hospice care does offer significant value for children and their families. The conceptual model highlighted the need for a comprehensive approach to assessing value. The model is a useful framework for future research examining the value of concurrent hospice care.

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.

Impact of Concurrent Hospice Care on Primary Care Visits Among Children in Rural Southern Appalachia.

INTRODUCTION: The purpose of the study was to test the effect of receiving pediatric concurrent hospice care on primary care visits. METHOD: This retrospective study was limited to pediatric decedents younger than 21 years with a hospice service claim from 2011 to 2013. Our outcome of interest concerned whether concurrent hospice care impacted primary care visits. RESULTS: Of the 460 pediatric decedents in rural Southern Appalachia, 42% continued to visit their primary care provider during hospice enrollment, whereas 51% received concurrent hospice care. Concurrent hospice care was significantly related to pediatric primary care visits (ß = 2.31; p < .001). DISCUSSION: Findings revealed that receipt of concurrent hospice care impacted primary care. Children in concurrent care were twice as likely to continue to receive care from their primary care provider. This finding is consistent with our hypothesis; however, the magnitude of the finding was unexpected given their residence in medically underserved areas.

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.

Comparison between Rural and Urban Appalachian Children in Hospice Care.

OBJECTIVE: The goal of this study was to compare rural and urban pediatric hospice patients in Appalachia. METHODS: Using a retrospective, nonexperimental design, we sought to compare characteristics of Appalachian rural and urban children younger than 21 years enrolled in the Medicaid hospice benefit. Descriptive statistics were calculated on the demographic, hospice, and clinical characteristics of children from Appalachia. Comparisons were calculated using Pearson χ2 for proportions and the Student t test for means. RESULTS: Less than half of the 1788 Appalachian children admitted to hospice care resided in rural areas (40%). Compared with children in urban areas of Appalachia, rural children were significantly younger (8 years vs 9.5 years) and more often had a complex chronic condition (56.0% vs 35.1%) and comorbidities (38.5% vs 17.0%) with technology dependence (32.6% vs 17.0%). Children in rural Appalachian were commonly from communities in the southern region of Appalachia (27.9% vs <10.0%), with median household incomes <$50,000/year (96.7% vs 22.4%). Significant differences were present in clinical care between rural and urban Appalachian children. Rural children had longer lengths of stay in hospice care (38 days vs 11 days) and were less likely to use the emergency department during hospice admission (19.0% vs 43.0%). These children more often visited their primary care provider (49.9% vs 31.3%) and sought care for symptoms from nonhospice providers (18.1% vs 10.0%) while admitted to hospice. CONCLUSIONS: Our results suggest that children admitted to hospice care in rural versus urban Appalachia have distinct characteristics. Rural children are admitted to hospice care with significant medical complexities and reside in areas of poverty. Hospice care for rural children suggests a continuity of care with longer hospice stays and fewer transitions to the emergency department; however, the potential for care fragmentation is present, with frequent visits to primary care and nonhospice providers for symptom management. Understanding the unique characteristics of children in Appalachia may be essential for advancing knowledge and care for these children at the end of life. Future research examining geographic variation in hospice care in Appalachia is warranted.

Patterns of Healthcare Services Among Children With Advanced Cancer in Concurrent Hospice Care.

BACKGROUND: Children with advanced cancer have access to comprehensive cancer care and hospice care if they enroll in concurrent hospice care. However, little is known about the patterns of nonhospice healthcare services used by these children. OBJECTIVE: The aim of this study was to examine the patterns of nonhospice healthcare services among children with cancer in concurrent hospice care. METHODS: This study was a retrospective cohort analysis of 2011-2013 Medicaid claims data from 862 pediatric cancer patients. Data were analyzed using descriptive statistics and latent class analysis (LCA). RESULTS: Children used 120 388 healthcare services, including inpatient and outpatient hospital services, laboratories and x-rays, durable medical equipment, medications, and others. These services clustered into 2 classes with moderate-intensity (57.49%) and high-intensity (42.50%) healthcare service use. Children in the high-intensity cluster were more likely to reside in the South with comorbidities, mental/behavioral health conditions, and technology dependence and were less likely to have solid tumors, compared with the moderate-intensity group. CONCLUSIONS: Nonhospice healthcare services clustered together in 2 distinct classes, providing critical insight into the complexity of the healthcare use among children with cancer in concurrent hospice care. IMPLICATIONS FOR PRACTICE: Understanding that pediatric patients in concurrent care may have different healthcare service patterns may assist oncology nurses caring for children with advanced cancer. These findings also have policy implications.

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 Comparison of Young Adults With and Without Cancer in Concurrent Hospice Care: Implications for Transitioning to Adult Health Care.

Purpose: Concurrent hospice care provides important end-of-life care for youth under 21 years. Those nearing 21 years must decide whether to shift to adult hospice or leave hospice for life-prolonging care. This decision may be challenging for young adults with cancer, given the intensity of oncology care. Yet, little is known about their needs. We compared young adults with and without cancer in concurrent hospice care. Methods: Retrospective comparative design used data from 2011 to 2013 U.S. Medicaid data files. Decedents were included if they were 20 years of age, enrolled in Medicaid hospice care, and used nonhospice medical services on the same day as hospice care based on their Medicaid claims activity dates. Results: Among 226 decedents, 21% had cancer; more than half were female (60.6%), Caucasian (53.5%), non-Hispanic (77.4%), urban dwelling (58%), and had mental/behavioral disorder (53%). Young adults with cancer were more often non-Caucasian (68.7% vs. 40.4%), technology dependent (47.9% vs. 24.2%), had comorbidities (83.3% vs. 30.3%), and lived in rural (58.3% vs. 37.6%), southern (41.7% vs. 20.8%) areas versus peers without cancer. Those with cancer had significantly fewer live discharges from hospice (5.7 vs. 17.3) and sought treatment for symptoms more often from nonhospice providers (35.4% vs. 14.0%). Conclusions: Young adults in concurrent hospice experience medical complexity, even at end-of-life. Understanding care accessed at 20 years helps providers guide young adults and families considering options in adult-focused care. Clinical and demographic differences among those with and without cancer in concurrent care highlight needs for research exploring racial and geographic equity.

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.

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.

End-of-Life Healthcare Service Needs Among Children With Neurological Conditions: A Latent Class Analysis.

ABSTRACT: BACKGROUND: At the end of life, children with neurological conditions have complex healthcare needs that can be met by providing care of their life-limiting conditions concurrently with hospice care (ie, concurrent care). Given the limited literature on concurrent care for children with neurologic conditions, this investigation aimed to identify patterns of nonhospice, healthcare service needs and to assess characteristics of children within each group. METHODS: A nationally representative sample children with neurological conditions enrolled in concurrent hospice care was used. Latent class analysis and descriptive statistics were calculated to identify patterns of healthcare needs and characteristics of children within the groups. A subgroup analysis of infants was conducted. RESULTS: Among the 1601 children, the most common types of services were inpatient hospitals, durable medical equipment, and home health. Two classes of service needs were identified: moderate intensity (58%) and high intensity (42%). Children in the moderate-intensity group were predominantly between 1 and 5 years old, male, White, and non-Hispanic. The most common neurological condition was central nervous system degeneration. They also had significant comorbidities, mental/behavioral health conditions, and technology dependence. They commonly resided in urban areas in the South. Children in the high-intensity group had a wide range of neurological conditions and high acuity. The subgroup analysis of infants indicated a different neurological profile. CONCLUSIONS: Two distinct classes of nonhospice, healthcare service needs emerged among children with neurological conditions at the end of life. The groups had unique demographic profiles.