1
40
19
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2017 List
URL Address
https://www.ncbi.nlm.nih.gov/pubmed/28684928
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Title
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End-of-life Transitions And Hospice Utilization For Adolescents: Does Having A Usual Source Of Care Matter?
Publisher
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Journal Of Hospice And Palliative Nursing
Date
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2017
Subject
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Adolescent; End-of-life; Hospice; Pediatric; Transition
Creator
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Keim-Malpass J; Lindley LC
Description
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Adolescents with life-limiting illnesses have intensive end-of-life trajectories and could benefit from initiation of hospice services. The medical home model, which includes having a usual source of primary care, may help facilitate quality outcomes at the end-of-life for adolescents. The purpose of this study was to determine the relationship between having a usual source of primary care on hospice utilization and end-of-life transitions among adolescents between 15-20 years with a life-limiting illness. A retrospective cohort design used 2007-2010 California Medicaid claims data (n=585). Our dependent variables were hospice utilization (i.e., hospice enrollment, hospice length of stay) and the independent variable was usual source of primary care. Multivariate regression techniques including least squares regression, multivariate logistic regression, and negative binomial regression were used in the analysis of the relationship between usual source of primary care and hospice utilization and end-of-life transitions. Ten percent of our sample utilized hospice services. Having a usual source of primary care was associated with an increase in hospice enrollment, hospice length of stay, and end-of-life transitions. Adolescents with a cancer diagnosis were more likely to enroll in hospice services. For adolescents at the end of life, having a usual source of primary care had a significant impact on hospice enrollment and length of stay. This study is among the first to demonstrate a relationship between primary care and hospice use among this vulnerable population.
Identifier
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DOI: 10.1097/NJH.0000000000000361
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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).
2017
Adolescent
end-of-life
Hospice
Journal of Hospice and Palliative Nursing
Keim-Malpass J
Lindley LC
Pediatric
September 2017 List
Transition
-
Text
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Citation List Month
July 2017 List
Notes
<p>Lindley, Lisa C<br />Keim-Malpass, Jessica<br />Journal Article<br />England<br />Int J Palliat Nurs. 2017 May 2;23(5):230-237. doi: 10.12968/ijpn.2017.23.5.230.</p>
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Title
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Quality Of Paediatric Hospice Care For Children With And Without Multiple Complex Chronic Conditions
Publisher
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International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
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Hospices; Multiple Complex Chronic Conditions; Paediatric Hospice Care
Creator
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Lindley LC; Keim-Malpass J
Description
An account of the resource
BACKGROUND: Hospice care for children with multiple complex chronic conditions (MCCC) is complicated given their unique health at the end of life (EOL). Little is known about the quality of the hospice care MCCC children receive and how that might differ from children without MCCC. OBJECTIVE: To compare the quality of hospice care (i.e., structures, processes, outcomes) between children with and without MCCC. METHODS: This retrospective, comparative study used data from the National Home and Hospice Care Survey, which included a nationally representative sample of paediatric hospice patients. The Pearson chi-square and Wald tests for comparisons were used. RESULTS: MCCC children enrolled in hospice care for over 2 months with multiple visits by hospice staff. They had low symptom burden with minimal discontinuity of care at EOL. Children without MCCC had short length of stays in hospice with few visits by nurses and other clinicians. These children had high symptom burden and significant disenrollment from hospice care to receive more aggressive treatment. CONCLUSIONS: The findings revealed significant differences in paediatric hospice care between MCCC and non-MCCC children, which provides critical insight into the quality of hospice care.
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10.12968/ijpn.2017.23.5.230
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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).
2017
Hospices
International Journal of Palliative Nursing
July 2017 List
Keim-Malpass J
Lindley LC
Multiple Complex Chronic Conditions
Paediatric Hospice Care
-
Text
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Citation List Month
November 2017 List
URL Address
http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=emex&AN=618161703
Notes
<p>Using Smart Source Parsing<br />( (no pagination), Article Number: e20171134. Date of Publication: September 2017</p>
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Title
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Repeal of the affordable care act will negatively impact children at end of life
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Child Health Care; Health Care Policy; Hospice Care; Child; Health Care Cost; Human; Medicaid; Priority Journal; Quality Of Life; Review; United States
Creator
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Keim-Malpass J; Lindley LC
Identifier
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10.1542/peds.2017-1134
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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).
2017
Child
Child Health Care
Health Care Cost
Health Care Policy
Hospice Care
Human
Keim-Malpass J
Lindley LC
Medicaid
November 2017 List
Pediatrics
Priority Journal
Quality Of Life
Review
United States
-
Text
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Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1016/j.pedhc.2013.07.011" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.pedhc.2013.07.011</a>
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Title
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Coverage of palliative and hospice care for pediatric patients with a life-limiting illness: a policy brief
Publisher
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Journal Of Pediatric Health Care
Date
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2013
Creator
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Keim-Malpass J; Hart TG; Miller JR
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<a href="http://doi.org/10.1016/j.pedhc.2013.07.011" target="_blank" rel="noreferrer">10.1016/j.pedhc.2013.07.011</a>
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Type
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Journal Article
Description
An account of the resource
2013-12
2013
Backlog
Hart TG
Journal Article
Journal Of Pediatric Health Care
Keim-Malpass J
Miller JR
-
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Title
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September 2018 List
Text
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Citation List Month
October 2018 List
URL Address
<a href="http://doi.org/10.1097/NJH.0000000000000466" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/NJH.0000000000000466</a>
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Title
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Pilot of a Pediatric Palliative Care Early Intervention Instrument
Publisher
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Journal of Hospice & Palliative Nursing
Date
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2018
Creator
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Shaw R; Miller JG; Seegal H; Keim-Malpass J
Description
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Current research demonstrates that pediatric symptom management care is often initiated in the late stages of disease once clinicians are no longer able to meaningfully impact symptom burden. Given that physicians or nurse practitioners are responsible for initiating palliative care referrals, it is incumbent upon registered nurses to advocate when improved symptom management care is needed. The pediatric palliative care screening instrument pilot provides a centralized instrument to document and quantify a patient's symptom profile, giving registered nurses the opportunity to objectively communicate and track a patient's need for improved symptom management care within the areas of pain, secretions, dyspnea, intractable seizures, nausea, vomiting, constipation, diarrhea, anorexia, cachexia, sleep disturbance, lethargy, anxiety, depression, and/or agitation. The 4-week quality improvement project at an academic teaching hospital formally incorporated the bedside registered nurses' symptom assessment into a centralized document. Fifty-three patients were identified as having an uncontrolled symptom burden in at least one of the symptom domains, indicating that excessive and untreated symptom burden was present on the acute care floor. The pediatric palliative care screening instrument could act as a conduit between bedside registered nurses and the palliative care team, serving to reduce the time between onset of excessive symptom burden and initiation of symptom management services.
Identifier
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<a href="http://doi.org/10.1097/NJH.0000000000000466" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000466</a>
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2018
Journal Of Hospice & Palliative Nursing
Keim-Malpass J
Miller JG
October 2018 List
Seegal H
September 2018 List
Shaw R
-
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Title
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January 2022 List
Text
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Citation List Month
January 2022 List
URL Address
<a href="http://doi.org/10.1177/10499091211056039" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/10499091211056039</a>
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Title
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Effectiveness of Pediatric Concurrent Hospice Care to Improve Continuity of Care
Publisher
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American Journal of Hospice and Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
pediatric hospice care; hospice length of stay; medicaid; concurrent hospice care; care continuity; emergency department use; hospice live discharge; inpatient admission
Creator
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Lindley LC; Cozad MJ; Mack JW; Keim-Malpass J; Svynarenko R; Hinds PS
Description
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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.
Identifier
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<a href="http://doi.org/10.1177/10499091211056039" target="_blank" rel="noreferrer noopener">10.1177/10499091211056039</a>
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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).
2021
American Journal of Hospice and Palliative Medicine
care continuity
concurrent hospice care
Cozad MJ
emergency department use
Hinds PS
Hospice Length Of Stay
hospice live discharge
inpatient admission
January 2022 List
Keim-Malpass J
Lindley LC
Mack JW
Medicaid
Pediatric Hospice Care
Svynarenko R
-
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Title
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January 2022 List
Text
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Citation List Month
January 2022 List
URL Address
<a href="http://doi.org/10.1111/jspn.12333" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/jspn.12333</a>
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Title
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Medical complexity and concurrent hospice care: A national study of Medicaid children from 2011 to 2013
Publisher
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Journal for Specialists in Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
pediatric; Child; United States; Hospices; Medicaid; Hospitalization; Patient Protection and Affordable Care Act; hospice care; end-of-life care; concurrent hospice care
Creator
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Keim-Malpass J; Cozad MJ; Svynarenko R; Mack JW; Lindley LC
Description
An account of the resource
PURPOSE: Pediatric hospice is a comprehensive model of care for medically complex children at end of life. The Affordable Care Act changed regulatory requirements for pediatric Medicaid enrollees to allow for enrollment into hospice services while still receiving life-prolonging therapy. There are gaps in understanding factors associated with pediatric concurrent hospice care use. The objectives were to examine the prevalence of concurrent hospice care overtime and investigated the relationship between medical complexity and concurrent hospice care among Medicaid children. DESIGN AND METHODS: We used national Medicaid data and included children less than 21 years with an admission to hospice care. Medical complexity was defined with four criteria (i.e., chronic conditions, functional limitations, high health care use and substantial needs). Using multivariate logistic regression, we evaluated the influence of medical complexity on concurrent hospice care use, while controlling for demographic, hospice, and community characteristics. RESULTS: Thirty-four percent of the study sample used concurrent hospice care. Medical complexity was unrelated to concurrent hospice care. However, the four individual criteria were associated. A complex chronic condition was negatively related to concurrent hospice care, whereas technology dependence, multiple complex chronic conditions, and mental/behavioral disorders were positively associated to concurrent care use. PRACTICE IMPLICATIONS: These findings suggest that concurrent hospice care may be important for a subset of medically complex children with functional limitations, high health utilization, and substantial needs at end of life.
Identifier
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<a href="http://doi.org/10.1111/jspn.12333" target="_blank" rel="noreferrer noopener">10.1111/jspn.12333</a>
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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).
2021
Child
concurrent hospice care
Cozad MJ
End-of-life Care
Hospice Care
Hospices
Hospitalization
January 2022 List
Journal for Specialists in Pediatric Nursing
Keim-Malpass J
Lindley LC
Mack JW
Medicaid
Patient Protection and Affordable Care Act
Pediatric
Svynarenko R
United States
-
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Title
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January 2022 List
Text
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January 2022 List
URL Address
<a href="http://doi.org/10.1097/njh.0000000000000810" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/njh.0000000000000810</a>
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Title
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A National Study to Compare Effective Management of Constipation in Children Receiving Concurrent Versus Standard Hospice Care
Publisher
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Journal of Hospice & Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Medicaid; constipation; pediatric hospice care; concurrent hospice care; pediatric end of life
Creator
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Lindley LC; Keim-Malpass J; Cozad MJ; Mack JW; Svynarenko R; Fornehed MLC; Stone W; Qualls K; Hinds PS
Description
An account of the resource
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.
Identifier
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<a href="http://doi.org/10.1097/njh.0000000000000810" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000810</a>
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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).
2021
concurrent hospice care
Constipation
Cozad MJ
Fornehed MLC
Hinds PS
January 2022 List
Journal Of Hospice & Palliative Nursing
Keim-Malpass J
Lindley LC
Mack JW
Medicaid
pediatric end of life
Pediatric Hospice Care
Qualls K
Stone W
Svynarenko R
-
Dublin Core
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Title
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February 2022 List
Text
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February 2022 List
URL Address
<a href="http://doi.org/10.1177/10499091211064202" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/10499091211064202</a>
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Pediatric End-of-Life Care in Rural America: A Systematic Review
Publisher
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American Journal of Hospice and Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
systematic review; pediatric palliative care; pediatric end-of-life; pediatric hospice; rural health care; rural hospice
Creator
An entity primarily responsible for making the resource
Stone W; Keim-Malpass J; Cozad MJ; Fornehed MLC; Lindley LC
Description
An account of the resource
BACKGROUND: Families increasingly desire to bring their children home from the acute care setting at end of life. This transition includes home to rural or remote areas. Little is known about the end-of-life care for children who reside in rural areas. OBJECTIVE: The purpose of this study was to comprehensively review and summarize the evidence regarding end-of-life care for children living in rural areas, identify key findings and gaps in the literature, and make recommendations for future research. METHODS: A systematic review was conducted from 2011 to 2021 using MEDLINE and CINAHL databases. RESULTS: Nine studies met inclusion criteria. Key themes from the literature included: barriers, facilitators, and needs. Three articles identified barriers to end-of-life care for children in rural communities, which included access to end-of-life care and clinicians trained to provide pediatric care. Three studies identified and evaluated the facilitators of end-of-life care for rural children. The articles identified technology and additional training as facilitators. Four studies reported on the needs of rural children for end-of-life care with serious illness. CONCLUSIONS: We found major barriers and unmet needs in the delivery of rural pediatric end-of-life care. A few facilitators in delivery of this type of care were explored. Overall research in this area was sparse. Future studies should focus on understanding the complexities associated with delivery of pediatric end-of-life care in rural areas.
Identifier
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<a href="http://doi.org/10.1177/10499091211064202" target="_blank" rel="noreferrer noopener">10.1177/10499091211064202</a>
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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).
2021
American Journal of Hospice and Palliative Medicine
Cozad MJ
February 2022 List
Fornehed MLC
Keim-Malpass J
Lindley LC
pediatric end-of-life
pediatric hospice
Pediatric Palliative Care
rural health care
rural hospice
Stone W
Systematic Review
-
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Title
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June 2022 List
Text
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Citation List Month
June 2022 List
URL Address
<a href="http://doi.org/10.14423/SMJ.0000000000001365" target="_blank" rel="noreferrer noopener">http://doi.org/10.14423/SMJ.0000000000001365</a>
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Title
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Comparison between Rural and Urban Appalachian Children in Hospice Care
Publisher
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Southern Medical Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Appalachian Region; Child; Hospices; Medicaid; Retrospective Studies; Rural; Urban
Creator
An entity primarily responsible for making the resource
Fornehed MLC; Svynarenko R; Keim-Malpass J; Cozad MJ; Qualls KA; Stone WL; Lindley LC
Description
An account of the resource
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 chi2 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. Copyright © Lippincott Williams & Wilkins.
Identifier
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<a href="http://doi.org/10.14423/SMJ.0000000000001365" target="_blank" rel="noreferrer noopener">10.14423/SMJ.0000000000001365</a>
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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).
2022
Appalachian Region
April 2022 List
Child
Cozad MJ
Fornehed MLC
Hospices
Keim-Malpass J
Lindley LC
Medicaid
Qualls KA
Retrospective Studies
Rural
Southern Medical Journal
Stone WL
Svynarenko R
Urban
-
Dublin Core
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Title
A name given to the resource
June 2022 List
Text
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June 2022 List
URL Address
<a href="http://doi.org/10.1177/10499091221089337" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/10499091221089337</a>
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Title
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Pediatric Concurrent Hospice Care: Cost Implications of a Hybrid Payment Model
Publisher
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American Journal of Hospice and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Concurrent hospice care; Incremental cost analysis; Medicaid; Pediatric hospice care
Creator
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Cozad MJ; Svynarenko R; Hinds PS; Mack JW; Keim-Malpass J; Lindley LC
Description
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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.
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<a href="http://doi.org/10.1177/10499091221089337" target="_blank" rel="noreferrer noopener">10.1177/10499091221089337</a>
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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).
2022
American Journal Of Hospice And Palliative Care
April 2022 List
concurrent hospice care
Cozad MJ
Hinds PS
Incremental cost analysis
Keim-Malpass J
Lindley LC
Mack JW
Medicaid
Pediatric Hospice Care
Svynarenko R
-
Dublin Core
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Title
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April 2022 List
Text
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Citation List Month
April 2022 List
URL Address
<a href="http://doi.org/10.1177/10499091211018661" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/10499091211018661</a>
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Title
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Patterns of Health Care Services During Pediatric Concurrent Hospice Care: A National Study
Publisher
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American Journal of Hospice and Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Children; End-of-life; Health care services; Hospice care; Pediatric
Creator
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Lindley LC; Svynarenko R; Mooney-Doyle K; Mendola A; Naumann WC; Keim-Malpass J
Description
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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.
Identifier
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<a href="http://doi.org/10.1177/10499091211018661" target="_blank" rel="noreferrer noopener">10.1177/10499091211018661</a>
2022
American Journal of Hospice and Palliative Medicine
April 2022 List
Children
end-of-life
Health Care Services
Hospice Care
Keim-Malpass J
Lindley LC
Mendola A
Mooney-Doyle K
Naumann WC
Pediatric
Svynarenko R
-
Dublin Core
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Title
A name given to the resource
March 2023 List
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Text
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Citation List Month
March List 2023
URL Address
<a href="http://doi.org/10.1097/njh.0000000000000918" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/njh.0000000000000918</a>
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Title
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Conceptualizing the Value of Pediatric Concurrent Hospice Care
Publisher
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Journal of Hospice and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Hospice Care; Hospice; Child; Delivery of Health Care; Hospice Care; Hospice; Human
Creator
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Sharp WS; Svynarenko R; Fornehed MLC; Cozad MJ; Keim-Malpass J; Mack JW; Hinds PS; Mooney-Doyle K; Mendola A; Lindley LC
Description
An account of the resource
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.
Identifier
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<a href="http://doi.org/10.1097/njh.0000000000000918" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000918</a>
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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).
2023
Child
Cozad MJ
Delivery of Health Care
Fornehed MLC
Hinds PS
Hospice
Hospice Care
Human
Journal of Hospice and Palliative Care
Keim-Malpass J
Lindley LC
Mack JW
March List 2023
Mendola A
Mooney-Doyle K
Sharp WS
Svynarenko R
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1089/jayao.2021.0004" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jayao.2021.0004</a>
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Title
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A Comparison of Young Adults With and Without Cancer in Concurrent Hospice Care: Implications for Transitioning to Adult Health Care
Publisher
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Journal of Adolescent and Young Adult Oncology
Date
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2022
Subject
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Oncology
Creator
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Mooney-Doyle K; Keim-Malpass J; Svynarenko R; Lindley LC
Description
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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.
Identifier
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<a href="http://doi.org/10.1089/jayao.2021.0004" target="_blank" rel="noreferrer noopener">10.1089/jayao.2021.0004</a>
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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).
2021 Special Edition - Oncology
2022
Journal Of Adolescent And Young Adult Oncology
Keim-Malpass J
Lindley LC
Mooney-Doyle K
Oncology
Svynarenko R
-
Dublin Core
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Title
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May 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May List 2023
URL Address
<a href="http://doi.org/10.1177/10499091231165276" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/10499091231165276</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Geographic Information Systems Utilization in Pediatric End-of-Life Research: A Scoping Review
Publisher
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American Journal of Hospice and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
geographic information system; hospice care; palliative therapy; article; child; clinical practice; data visualization; Geographic Information Systems; human; Information Systems; software; systematic review
Creator
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Qualls KA; Svynarenko R; Cozad MJ; Keim-Malpass J; Huang G; Lindley LC
Description
An account of the resource
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.
Identifier
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<a href="http://doi.org/10.1177/10499091231165276" target="_blank" rel="noreferrer noopener">10.1177/10499091231165276</a>
Rights
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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).
2023
American Journal Of Hospice And Palliative Care
Article
Child
Clinical Practice
Cozad MJ
data visualization
geographic information system
Geographic Information Systems
Hospice Care
Huang G
Human
Information Systems
Keim-Malpass J
Lindley LC
May List 2023
Palliative Therapy
Qualls KA
Software
Svynarenko R
Systematic Review
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
July 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July List 2023
URL Address
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"> http://doi.org/</a>
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Title
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Evaluating the cost-effectiveness of pediatric concurrent versus standard hospice care
Publisher
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Nursing Economic$
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Cost-Benefit Analysis; Hospice Care; Hospices
Creator
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Lindley LC; Cozad MJ; Svynarenko R; Keim-Malpass J; Mack JW; Hinds PS
Description
An account of the resource
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.
Identifier
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<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
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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).
2022
Cost-Benefit Analysis
Cozad MJ
Hinds PS
Hospice Care
Hospices
July List 2023
Keim-Malpass J
Lindley LC
Mack JW
Nursing Economic$
Svynarenko R
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
July 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July List 2023
URL Address
<a href="http://doi.org/10.1177/01939459231163441" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/01939459231163441</a>
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Title
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Application of Instrumental Variable Analysis in Pediatric End-of-Life Research: A Case Study
Publisher
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Western Journal of Nursing Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Hospice Care; Terminal Care; Child; Death; Humans; Palliative Care; Patient Protection and Affordable Care Act; United States
Creator
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Svynarenko R; Cozad MJ; Mack JW; Keim-Malpass J; Hinds PS; Lindley LC
Description
An account of the resource
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%.
Identifier
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<a href="http://doi.org/10.1177/01939459231163441" target="_blank" rel="noreferrer noopener">10.1177/01939459231163441</a>
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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).
2023
Child
Cozad MJ
Death
Hinds PS
Hospice Care
Humans
July List 2023
Keim-Malpass J
Lindley LC
Mack JW
Palliative Care
Patient Protection and Affordable Care Act
Svynarenko R
Terminal Care
United States
Western Journal of Nursing Research
-
Dublin Core
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Title
A name given to the resource
June 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2022 List
URL Address
<a href="https://journals.sagepub.com/doi/10.1177/10499091231173415">https://journals.sagepub.com/doi/10.1177/10499091231173415</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
A Comparison of Hospice Care Utilization Between Rural and Urban Children in Appalachia: A Geographic Information Systems Analysis
Publisher
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American Journal of Hospice and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Hospice Care; Hospices; Information Systems; pediatric hospice care; concurrent hospice care; medicaid; spatial analysis; ArcGIS; rural hospice care
Creator
An entity primarily responsible for making the resource
Svynarenko R; Huang G; Keim-Malpass J; Cozad MJ; Qualls KA; Stone Sharp W; Kirkland DA; Lindley LC
Rights
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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).
Identifier
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<a href="https://journals.sagepub.com/doi/10.1177/10499091231173415">10.1177/10499091231173415</a>
2023
American Journal Of Hospice And Palliative Care
ArcGIS
concurrent hospice care
Cozad MJ
Hospice Care
Hospices
Huang G
Information Systems
June 2022 List
Keim-Malpass J
Kirkland DA
Lindley LC
Medicaid
Pediatric Hospice Care
Qualls KA
rural hospice care
spatial analysis
Stone Sharp W
Svynarenko R
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
August 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1111/jrh.12713" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/jrh.12713</a>
Dublin Core
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Title
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Incremental cost analysis of pediatric hospice care in rural and urban Appalachia
Publisher
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The Journal of Rural Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Child; United States; Hospice Care; Patient Protection and Affordable Care Act; Costs and Cost Analysis; Hospices; Aged; Hospice Care; Medicare; Hospices; Appalachian Region
Creator
An entity primarily responsible for making the resource
Svynarenko R; Cozad MJ; Keim-Malpass J; Lindley LC
Description
An account of the resource
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.
Identifier
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<a href="http://doi.org/10.1111/jrh.12713" target="_blank" rel="noreferrer noopener">10.1111/jrh.12713</a>
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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).
2023
Aged
Appalachian Region
August List 2048
Child
Costs And Cost Analysis
Cozad MJ
Hospice Care
Hospices
Humans
Keim-Malpass J
Lindley LC
Medicare
Patient Protection and Affordable Care Act
Svynarenko R
The Journal of Rural Health
United States