Comparative Effectiveness of Usual Source of Care Approaches to Improve End-of-life Outcomes for Children with Intellectual Disability
Case Management; Comparative Effectiveness; Emergency Room Utilization; Hospital Readmissions; Intellectual Disability; Pediatric Hospice Care; Usual Source Of Care
CONTEXT: Children with intellectual disability (ID) are at risk for adverse end-of-life outcomes including high emergency room utilization and hospital readmissions, along with low hospice enrollment. OBJECTIVES: The objective of this study was to compare the effectiveness of usual source of care approaches to improve end-of-life outcomes for children with ID. METHODS: We used longitudinal California Medicaid claims data. We included children who were less than 21 years with fee-for-service Medicaid claims, died between January 1, 2007 and December 31, 2010, and had a moderate to profound ID diagnosis. End-of-life outcomes (i.e., hospice enrollment, emergency room utilization, hospital readmissions) were measured via claims data. Our treatments were usual source of care (USC) only versus usual source of care plus targeted case management (USC plus TCM). Using instrumental variable analysis, we compared the effectiveness of treatments on end-of-life outcomes. RESULTS: Ten percent of children with ID enrolled in hospice, 73% utilized the emergency room, and 20% had 3 or more hospital admissions in their last year of life. USC plus TCM relative to USC only had no effect on hospice enrollment; however, it significantly reduced the probability of emergency room utilization (B=-1.29, p<0.05) and hospital readmissions (B=-1.71, p<0.001). CONCLUSIONS: Our findings demonstrated that USC plus TCM was more effective at improving end-of-life outcomes for children with ID. Further study of the extent of UCS and TCM involvement in reducing emergency room utilization and hospital readmissions at end of life is needed.
Lindley LC; Cozad MJ
Journal Of Pain and Symptom Management
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1016/j.jpainsymman.2017.06.007
What do parents value regarding pediatric palliative and hospice care in the home setting?
discrete choice experiment; home-based care; pediatric hospice care; pediatric palliative care
CONTEXT: Children with life-shortening serious illnesses and medically complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most. OBJECTIVE: To explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home. METHODS: Twenty domains of high-value PPHC@Home, derived from the National Consensus Project's Guidelines for Quality Palliative Care, the literature, and a stakeholder panel, were evaluated. Using a discrete choice experiment, parents provided their ratings of the most and least valued PPHC@Home domains. We also explored potential differences in how subgroups of parents rated the domains. RESULTS: Forty-seven parents participated. Overall, highest-rated domains included Physical Aspects of Care: Symptom Management, Psychological/EmotionalSupportfor the Child, and Care Coordination. Lowest-rated domains included Spiritual and Religious Aspects of Care and Cultural Aspects of Care. In exploratory analyses, parents who had other children rated the Psychological/Emotional Aspects of Care for the Sibling(s) domain significantly higher than parents who did not have other children (P=0.02). Furthermore, bereaved parents rated the CaregiverSupportat the End of Life domain significantly higher than parents who were currently caring for their child (P=0.04). No other significant differences in domain ratings were observed. CONCLUSIONS: Knowing what parents value most about PPHC@Home provides the foundation for further exploration and conversation about priority areas for resource allocation and care improvement efforts.
Boyden J Y; Ersek M; Deatrick J A; Widger K; LaRagione G; Lord B; Feudtner C
Journal of Pain and Symptom Management
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2020.07.024" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.07.024</a>
Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach
Pediatric palliative care; Pediatric hospice care; Home-based care; Experience with care; Instrument development
Background: Many children with serious illnesses are receiving palliative and end-of-life care from pediatric palliative and hospice care teams at home (PPHC@Home). Despite the growth in PPHC@Home, no standardized measures exist to evaluate whether PPHC@Home provided in the U.S. meets the needs and priorities of children and their families. Method(s): We developed and conducted a preliminary evaluation of a family-reported measure of PPHC@Home experiences using a multi-method, multi-stakeholder approach. Our instrument development process consisted of four phases. Item identification and development (Phase 1) involved a comprehensive literature search of existing instruments, guidelines, standards of practice, and PPHC@Home outcome studies, as well as guidance from a PPHC stakeholder panel. Phase 2 involved the initial item prioiritization and reduction using a discrete choice experiment (DCE) with PPHC professionals and parent advocates. Phase 3 involved a second DCE with bereaved parents and parents currently receiving care for their child to further prioritize and winnow the items to a set of the most highly-valued items. Finally, we conducted cognitive interviews with parents to provide information about the content validity and clarity of the newly-developed instrument (Phase 4). Result(s): Items were compiled predominantly from three existing instruments. Phase 2 participants included 34 PPHC providers, researchers, and parent advocates; Phase 3 participants included 47 parents; and Phase 4 participants included 11 parents. At the completion of Phase 4, the Experiences of Palliative and Hospice Care for Children and Caregivers at Home (EXPERIENCE@Home) Measure contains 22 of the most highly-valued items for evaluating PPHC@Home. These items include "The care team treats my child's physical symptoms so that my child has as good a quality of life as possible", "I have regular access to on-call services from our care team", and "The nurses have the knowledge, skills, and experience to support my child's palliative or hospice care at home." Conclusion(s): The EXPERIENCE@Home Measure is the first known to specifically measure family-reported experiences with PPHC@Home in the U.S. Future work will include formal psychometric evaluation with a larger sample of parents, as well as evaluation of the clinical utility of the instrument with PPHC@Home teams. Copyright © 2021, The Author(s).
Boyden JY; Feudtner C; Deatrick JA; Widger K; LaRagione G; Lord B; Ersek M
BMC Palliative Care
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12904-020-00703-0" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-00703-0</a>
Cost of Pediatric Concurrent Hospice Care: An Economic Analysis of Relevant Cost Components, Review of the Literature, and Case Illustration
end-of-life; scoping review; pediatric hospice care; cost analysis; pediatric concurrent care
Background: Concurrent care enables seriously ill pediatric Medicaid and Children's Health Insurance Program (CHIP) beneficiaries to continue curative treatments along with the supportive services usually associated with hospice care. Although a few studies have examined pediatric concurrent care, none has explored the economics of this care delivery approach for medically complex children. Objective(s): The purpose of this study was to identify the cost components relevant for an economic analysis of pediatric concurrent hospice care and demonstrate the use of the cost components in an economic case illustration. Method(s): A scoping review of the hospice cost literature was conducted to identify article focused on hospice costs that were published in the journal literature from 2000 to 2019. A preliminary economic analysis was also conducted using a cost-minimization approach with data from a large mid-Atlantic pediatric hospice provider. We compared costs between concurrent versus standard hospice care for children. Result(s): Fifteen hospice cost articles were identified and no article on concurrent care costs. Most articles in the scoping review focused on hospice personnel costs, followed by supplies/equipment, and other. Personnel and costs were higher for standard hospice children compared with concurrent care, whereas concurrent care children had higher supplies/equipment costs. Conclusion(s): Identifying cost components are critical to economic analysis of pediatric concurrent care. These findings provide preliminary evidence about the difference in costs between concurrent and standard hospice care for children.
Lindley LC; Richar CS; Hoit T; Steinhorn DM
Journal of Palliative Medicine
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2020.0495" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0495</a>
The Pediatric Palliative Improvement Network: a national healthcare learning collaborative
collaborative; healthcare learning network; palliative care; pediatric hospice care; pediatric palliative care; quality; quality improvement
BACKGROUND: Although multiple national organizations have created consensus guidelines and metrics for pediatric palliative care (PPC), standardized implementation and measurement has been challenging. In 2016, 6 PPC physician-experts in program development and quality improvement (QI) formed a healthcare learning collaborative network entitled the Pediatric Palliative Improvement Network (PPIN). MEASURES AND INTERVENTIONS: The primary drivers identified were 1) Feasibility of a national learning network demonstrated through the completion of one small QI project, 2) Standard education in QI methodology and 3) Salient pediatric palliative care operational, clinical and satisfaction metrics clearly defined. OUTCOMES: PPIN now includes146 members representing 51 organizations. In 2019 the group completed a national collaborative QI project focused on pain assessment at the time of initial consult, demonstrating a national increase in pain assessment from 75.8% to >90% over 12 months. PPIN has hosted two national QI workshops training more than 50 PPC clinicians in QI, with a 2-hour webinar provided in 2020 due to COVID. Monthly calls since 2017 provide QI methods "refreshers", share local works in progress, and provide infrastructure for future collaborative projects. CONCLUSIONS: PPIN has become a sustainable organization which improves the quality of PPC through focus on national QI methods training, successful collaborative projects, and the creation of a learning and peer support community with regular calls. With the advent of the Palliative Care Quality Collaborative in 2020, PPIN provides critical educational and organizational infrastructure to inform ongoing quality efforts in PPC, now and in the future.
Thienprayoon R; Jones E; Humphrey L; Ragsdale L; Williams C; Klick JC
Journal of Pain and Symptom Management
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2021.06.020" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.06.020</a>
Identifying Patterns of Pediatric Mental and Behavioral Health at End of Life: A National Study
end-of-life care; hospice care; Medicaid; pediatric hospice care; pediatric mental and behavioral health
Children, who enroll in hospice, have complex mental and behavioral health (MHBH) problems. There is limited literature on patterns of these problems among children at their end of life. Using the national database of 6195 children enrolled in hospice between January 1, 2011, and December 31, 2013, and latent class analysis, this study identified 4 distinctive classes of children. Neurodevelopment and anxiety class (26.5% of the sample) had 41.3% of children of 15 years or older, who had an average of 1.4 MHBH comorbidities and took 17 medications; 29.1% had physical health comorbidities, and 23% were dependent on technology. In the Behavior and Neurodevelopment class (20%), 53.1% of the children were between ages 6 and 14 years, who had an average of 2 MHBH comorbidities and took 17 medications. In the Physiology class (43.4%), 65.5% of children were younger than 5 years, had 1 MHBH comorbidity, and took 19 medications. In the Mood, Behaviors, and Anxiety class (10.2%), more than 90% of children were older than 6 years, had 4 MHBH comorbidities, and took 30 medications. In the latter 3 classes, approximately half of the children either had physical health comorbidities or were technology dependent. These findings highlight the importance of end-of-life care that accounts for the likely presence of complicated patterns of MHBH conditions.
Svynarenko R; Beebe LH; Lindley LC
Journal of Hospice & Palliative Nursing
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/njh.0000000000000800" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000800</a>
End-of-Life Healthcare Service Needs Among Children With Neurological Conditions: A Latent Class Analysis
concurrent hospice care; healthcare services; infants; latent class analysis; neurological conditions; nursing; pediatric hospice care; pediatrics
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.
Lindley LC; Svynarenko R; Mooney-Doyle K; Mendola A; Naumann WC; Fortney CA
Journal of Neuroscience Nursing
2021
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<a href="http://doi.org/10.1097/jnn.0000000000000615" target="_blank" rel="noreferrer noopener">10.1097/jnn.0000000000000615</a>
Effectiveness of Pediatric Concurrent Hospice Care to Improve Continuity of Care
pediatric hospice care; hospice length of stay; medicaid; concurrent hospice care; care continuity; emergency department use; hospice live discharge; inpatient admission
BackgroundThe 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.ObjectiveThe 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.MethodsUsing 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.ResultsConcurrent hospice care affected care continuity. It resulted in longer lengths of stays in hospice (? = 2.76, P < .001) and reduced hospice live discharges (? = ?2.80, P < .05), compared to standard hospice care. Concurrent care was not effective at reducing emergency room (? = 2.09, P < .001) or inpatient care (? = .007, P < .05) transitions during hospice enrollment.ConclusionOur study provides critical insight into the quality of care delivered for children at end of life. These findings have policy implications.
Lindley LC; Cozad MJ; Mack JW; Keim-Malpass J; Svynarenko R; Hinds PS
American Journal of Hospice and Palliative Medicine
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/10499091211056039" target="_blank" rel="noreferrer noopener">10.1177/10499091211056039</a>
A National Study to Compare Effective Management of Constipation in Children Receiving Concurrent Versus Standard Hospice Care
Medicaid; constipation; pediatric hospice care; concurrent hospice care; pediatric end of life
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 (β = .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.
Lindley LC; Keim-Malpass J; Cozad MJ; Mack JW; Svynarenko R; Fornehed MLC; Stone W; Qualls K; Hinds PS
Journal of Hospice & Palliative Nursing
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/njh.0000000000000810" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000810</a>
Unraveling EPSDT and Pediatric Hospice Care: An Exploratory Policy Analysis
Early and Periodic Screening Diagnosis and Treatment; Medicaid; Pediatric concurrent hospice care; Pediatric hospice care
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(s): The study purpose was to identify policy guidance on EPSDT and pediatric hospice care from state Medicaid documents. Method(s): 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. Result(s): 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(s): 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.
Lindley LC; Weaver MS
American Journal of Hospice and Palliative Care
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/10499091221079329" target="_blank" rel="noreferrer noopener">10.1177/10499091221079329</a>
Pediatric Concurrent Hospice Care: Cost Implications of a Hybrid Payment Model
Concurrent hospice care; Incremental cost analysis; Medicaid; Pediatric hospice care
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(S): 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. METHOD(S): 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. RESULT(S): 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(S): 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.
Cozad MJ; Svynarenko R; Hinds PS; Mack JW; Keim-Malpass J; Lindley LC
American Journal of Hospice and Palliative Care
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/10499091221089337" target="_blank" rel="noreferrer noopener">10.1177/10499091221089337</a>
What do parents value regarding pediatric palliative and hospice care in the home setting?
discrete choice experiment; home-based care; pediatric hospice care; pediatric palliative care
CONTEXT: Children with life-shortening serious illnesses and medically complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most. OBJECTIVE: To explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home. METHODS: Twenty domains of high-value PPHC@Home, derived from the National Consensus Project's Guidelines for Quality Palliative Care, the literature, and a stakeholder panel, were evaluated. Using a discrete choice experiment, parents provided their ratings of the most and least valued PPHC@Home domains. We also explored potential differences in how subgroups of parents rated the domains. RESULTS: Forty-seven parents participated. Overall, highest-rated domains included Physical Aspects of Care: Symptom Management, Psychological/EmotionalSupportfor the Child, and Care Coordination. Lowest-rated domains included Spiritual and Religious Aspects of Care and Cultural Aspects of Care. In exploratory analyses, parents who had other children rated the Psychological/Emotional Aspects of Care for the Sibling(s) domain significantly higher than parents who did not have other children (P=0.02). Furthermore, bereaved parents rated the CaregiverSupportat the End of Life domain significantly higher than parents who were currently caring for their child (P=0.04). No other significant differences in domain ratings were observed. CONCLUSIONS: Knowing what parents value most about PPHC@Home provides the foundation for further exploration and conversation about priority areas for resource allocation and care improvement efforts.
Boyden JY; Ersek M; Deatrick JA; Widger K; LaRagione G; Lord BT; Feudtner C
Journal of Pain and Symptom Management
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2020.07.024" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.07.024</a>
"there's Just No Way to Help, and They Did." Parents Name Compassionate Care as a New Domain of Quality in Pediatric Home-Based Hospice and Palliative Care
compassion; home-based palliative care; hospice care; pediatric hospice care
Background: To design high-quality home-based hospice and palliative care (HBHPC) systems, it is imperative to understand the perspectives of parents whose children enroll in HBHPC programs. Objective(s): The goal of this project was to identify and define parent/caregiver-prioritized domains of family-centered care in HBHPC by performing semistructured interviews of parents/caregivers ("parents") across Ohio whose children have received HBHPC. We hypothesized that the 10 provider-prioritized domains and their definitions, as identified in our previous research, would be modified and augmented by parents for application in the pediatric HBHPC setting. Method(s): This was a qualitative study utilizing semistructured interviews of bereaved parents of children who were enrolled in a pediatric HBHPC program at the three sites from 2012 to 2016 and parents of children who were currently enrolled in these programs for at least a year. Result(s): Parent-prioritized thematic codes mapped to 9 of the 10 provider-prioritized domains of quality HBHPC; none mapped to the domain "Ethical and Legal Aspects of Care." Although most of the provider-prioritized domains are pertinent to parents, parents defined these domains differently, deepening our understanding and perspective of quality within each domain. An 11th domain, Compassionate Care, was created and defined based on emergent themes. Conclusion(s): Parent/caregiver-prioritized domains of quality in pediatric HBHPC map closely to provider-prioritized domains, but parents define these domains differently. Parents also prioritize Compassionate Care as a new domain of quality in pediatric HBHPC. Measuring the quality of care provided in HBHPC programs through this broader perspective should enable the selection of measures which are truly patient- and family-centered. © Copyright 2020, Mary Ann Liebert, Inc., publishers 2020.
Thienprayoon R; Grossoehme D; Humphrey LM; Pestian T; Frimpong-Manso M; Malcolm H; Kitamura E; Jenkins R; Friebert S
Journal of Palliative Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2019.0418" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0418</a>
Differences in Characteristics of Children with Cancer Who Receive Standard versus Concurrent Hospice Care
pediatric oncology; Medicaid; pediatric hospice care; 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.
Svynarenko R; Mack JW; Lindley LC
Pediatric Blood and Cancer
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/pbc.29106" target="_blank" rel="noreferrer noopener">10.1002/pbc.29106</a>
A Comparison of Hospice Care Utilization Between Rural and Urban Children in Appalachia: A Geographic Information Systems Analysis
Hospice Care; Hospices; Information Systems; pediatric hospice care; concurrent hospice care; medicaid; spatial analysis; ArcGIS; rural hospice care
Svynarenko R; Huang G; Keim-Malpass J; Cozad MJ; Qualls KA; Stone Sharp W; Kirkland DA; Lindley LC
American Journal of Hospice and Palliative Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://journals.sagepub.com/doi/10.1177/10499091231173415">10.1177/10499091231173415</a>
The Role of Pediatric Palliative Care Following Nonaccidental Trauma
Palliative Care; pediatric palliative care; pediatric hospice care; nonaccidental trauma; pediatric hospital palliative care
All children experiencing child maltreatment/neglect require child abuse experts to offer the complex care needed, and for the child with potential life-limiting injuries, both child abuse and palliative care experts are integral to the team. The current literature describes the involvement of child abuse pediatrics after patients are already engaged with pediatric palliative care (PPC). Here we describe a case of an infant who suffered injuries after nonaccidental trauma (NAT) and the subsequent role of PPC. In the case described, PPC was consulted in the context of a grave neurological prognosis after NAT. The mother retained full decision-making rights, and she wanted to protect her daughter from a life dependent on others and medical technology. Our team supported the mother in the face of multiple layers of loss-her daughter, her relationship with the perpetrator, her home, and the threat of job loss due to time away.
Henderson TG; Graff AH; Thorvilson MJ
Journal of Palliative Medicine
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2023.0165" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0165</a>