1
40
14
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Dublin Core
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Title
A name given to the resource
February 2024 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
February List 2024
URL Address
<a href="http://doi.org/10.1089/jpm.2023.0147" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2023.0147</a>
Dublin Core
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Title
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Community-Based Pediatric Palliative Care: How Services Support Children's and Families' Quality of Life
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
mental health; child; article; controlled study; human; male; palliative therapy; pain; sibling; spiritual care; quality of life; interview; interpersonal communication; cost effectiveness analysis; adolescent; socialization; caregiver; convenience sample; bereavement support; family; clinician; participatory research; self care; psychological well-being; physical well-being; disease management; community; community integration
Creator
An entity primarily responsible for making the resource
Wang Y; Ferreira E; Savageau J; Beitman A; Young M; Gabovitch E; Merriam G; Jozan A; Padgett K; Bateman S
Description
An account of the resource
Background: The Massachusetts Department of Public Health's Pediatric Palliative Care Network (PPCN) provides Community-Based Pediatric Palliative Care (CBPPC) to children with life-limiting conditions and their families. CBPPC services aim to improve children and families' quality of life (QOL). <br/>Objective(s): To identify perceived domains of QOL important for children and families and to understand whether and how CBPPC supports QOL. <br/>Design(s): A community-based participatory research framework was used to develop recruitment and data collection materials for eight focus groups and seven interviews. Collected data were transcribed and analyzed with an inductive approach. Setting/Subjects: A convenience sample of 33 PPCN caregivers, 20 providers, and seven key informants, including policymakers, community organizations, and hospital-based clinicians, were interviewed virtually in the United States. Measurements: Perceived QOL domains for children and families, respectively, and perceived impact of CBPPC services on QOL. <br/>Result(s): Reported QOL domains described as important for children were socialization/community integration and accessibility; expression/play; and physical wellness. Control or autonomy, psycho-emotional wellness, and self-care were identified as important for families. Clinical services were described as "integral to mental health" through offered spiritual support; advocacy in the community; and education. PPCN's integrative services were noted as distractions from pain and helped improve communication and bonding. Sibling support and bereavement care were also mentioned as impactful on QOL. <br/>Conclusion(s): Family-centered CBPPC was described as supportive of children's and families' QOL. Future studies should consider using population-based QOL measures, leveraging the QOL domains identified through this analysis and other outcome measures in a cost-effectiveness analysis.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2023.0147" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0147</a>
Rights
Information about rights held in and over the resource
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
Adolescent
Article
Bateman S
Beitman A
Bereavement Support
Caregiver
Child
Clinician
Community
community integration
Controlled Study
Convenience Sample
Cost Effectiveness Analysis
Disease Management
Family
February List 2024
Ferreira E
Gabovitch E
Human
Interpersonal Communication
Interview
Journal of Palliative Medicine
Jozan A
Male
Mental Health
Merriam G
Padgett K
Pain
Palliative Therapy
participatory research
physical well-being
Psychological Well-being
Quality Of Life
Savageau J
Self Care
Sibling
Socialization
Spiritual Care
Wang Y
Young M
-
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
February 2024 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
February List 2024
URL Address
<a href="http://doi.org/10.1007/s00431-023-05330-4" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00431-023-05330-4</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
Evaluating quality of life in pediatric palliative care: a cross-sectional analysis of children's and parents' perspectives
Publisher
An entity responsible for making the resource available
European Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; article; female; human; male; perception; palliative therapy; quality of life; clinical article; parent; cross-sectional study; adolescent; voice; drug therapy; nonparametric test; psychologic assessment; disease management; special situation for pharmacovigilance; sociodemographics
Creator
An entity primarily responsible for making the resource
Toro-Perez D; Limonero JT; Guillen M; Bolance C; Vilarrubi SN; Camprodon-Rosanas E
Description
An account of the resource
The patient's perspective is an essential component of understanding the individual experience of suffering in children with palliative needs, but it is a perspective that is often overlooked. The aim of this study was to compare the perception of quality of life (QoL) of children with life-limiting and life-threatening conditions expressed by the children themselves and their parents. Through a cross-sectional study, the responses of 44 parent-child dyads were obtained and the analysis was performed with the statistics based on Student's t distribution and non-parametric tests. Children value QoL more positively (mean = 6.95, SD = 1.85) than their parents (mean = 5.39, SD = 2.43). This difference exists even if we consider sociodemographic and disease variables. The presence of exacerbated symptoms is the situation in which both parents (mean = 3.70; SD = 1.95) and children (mean = 5.60; SD = 1.17) evaluate QoL more negatively. Conclusions: Children have a more optimistic view than their parents. When the child is the one who reports a lower QoL score than their parent, the child should be carefully monitored. The voice of the child and that of the family members can be collected to create a "family voice" and can be complementary. What is known: • Children with life-limiting conditions experience multiple and changing symptoms that affect their QoL. • The child's perspective is often overlooked. What is new: • Children value QoL more positively than their parents do, even if we control for sociodemographic variables and the disease itself. • When the child is the one who reports a lower QoL score than their parent, the child should be carefully monitored.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00431-023-05330-4" target="_blank" rel="noreferrer noopener">10.1007/s00431-023-05330-4</a>
Rights
Information about rights held in and over the resource
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
Adolescent
Article
Bolance C
Camprodon-Rosanas E
Child
Clinical Article
Cross-sectional Study
Disease Management
Drug Therapy
European Journal of Pediatrics
February List 2024
Female
Guillen M
Human
Limonero JT
Male
nonparametric test
Palliative Therapy
Parent
Perception
psychologic assessment
Quality Of Life
sociodemographics
special situation for pharmacovigilance
Toro-Perez D
Vilarrubi SN
Voice
-
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
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2020 Oncology 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
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1002/pbc.28409" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.28409</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
The COVID-19 pandemic: A rapid global response for children with cancer from SIOP, COG, SIOP-E, SIOP-PODC, IPSO, PROS, CCI, and St Jude Global
Publisher
An entity responsible for making the resource available
Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Humans; Child; pediatrics; childhood cancer; Pediatrics; Disease Management; Medical Oncology; Consensus; Societies; Medical; retinoblastoma; acute lymphoblastic leukemia; COVID-19; SARS-CoV-2; Betacoronavirus; Pandemics; Pneumonia; Burkitt lymphoma; Coronavirus Infections/*epidemiology; Neoplasms/complications/diagnosis/*therapy; Viral/*epidemiology; Hodgkin lymphoma; low-grade glioma; nephroblastoma; WHO Global Initiative on Childhood Cancer; Wilms tumor
Creator
An entity primarily responsible for making the resource
Sullivan M; Bouffet E; Rodriguez-Galindo C; Luna-Fineman S; Khan M S; Kearns P; Hawkins D S; Challinor J; Morrissey L; Fuchs J; Marcus K; Balduzzi A; Basset-Salom L; Caniza M; Baker J N; Kebudi R; Hessissen L; Sullivan R; Pritchard-Jones K
Description
An account of the resource
The COVID-19 pandemic is one of the most serious global challenges to delivering affordable and equitable treatment to children with cancer we have witnessed in the last few decades. This Special Report aims to summarize general principles for continuing multidisciplinary care during the SARS-CoV-2 (COVID-19) pandemic. With contributions from the leadership of the International Society for Pediatric Oncology (SIOP), Children's Oncology Group (COG), St Jude Global program, and Childhood Cancer International, we have sought to provide a framework for healthcare teams caring for children with cancer during the pandemic. We anticipate the burden will fall particularly heavily on children, their families, and cancer services in low- and middle-income countries. Therefore, we have brought together the relevant clinical leads from SIOP Europe, COG, and SIOP-PODC (Pediatric Oncology in Developing Countries) to focus on the six most curable cancers that are part of the WHO Global Initiative in Childhood Cancer. We provide some practical advice for adapting diagnostic and treatment protocols for children with cancer during the pandemic, the measures taken to contain it (e.g., extreme social distancing), and how to prepare for the anticipated recovery period.
Identifier
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<a href="http://doi.org/10.1002/pbc.28409" target="_blank" rel="noreferrer noopener">10.1002/pbc.28409</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).
2020
Acute Lymphoblastic Leukemia
Baker J N
Balduzzi A
Basset-Salom L
Betacoronavirus
Bouffet E
Burkitt lymphoma
Caniza M
Challinor J
Child
Childhood Cancer
Consensus
Coronavirus Infections/*epidemiology
COVID-19
Disease Management
Fuchs J
Hawkins D S
Hessissen L
Hodgkin lymphoma
Humans
Kearns P
Kebudi R
Khan M S
low-grade glioma
Luna-Fineman S
Marcus K
Medical
Medical Oncology
Morrissey L
Neoplasms/complications/diagnosis/*therapy
nephroblastoma
Oncology 2020 List
Pandemics
Pediatric Blood and Cancer
Pediatrics
Pneumonia
Pritchard-Jones K
retinoblastoma
Rodriguez-Galindo C
SARS-CoV-2
Societies
Sullivan M
Sullivan R
Viral/*epidemiology
WHO Global Initiative on Childhood Cancer
Wilms tumor
-
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
Backlog
URL Address
<a href="http://doi.org/10.1136/archdischild-2013-304207" target="_blank" rel="noreferrer">http://doi.org/10.1136/archdischild-2013-304207</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
Presentation and management of chronic pain
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Child; Humans; Chronic Pain; Disease Management
Creator
An entity primarily responsible for making the resource
Rajapakse D; Liossi C; Howard RF
Description
An account of the resource
Chronic pain is an important clinical problem affecting significant numbers of children and their families. The severity and impact of chronic pain on everyday function is shaped by the complex interaction of biological, psychological and social factors that determine the experience of pain for each individual, rather than a straightforward reflection of the severity of disease or extent of tissue damage. In this article we present the research findings that strongly support a biopsychosocial concept of chronic pain, describe the current best evidence for management strategies and suggest a common general pathway for all types of chronic pain. The principles of management of some of the most important or frequently encountered chronic pain problems in paediatric practice; neuropathic pain, complex regional pain syndrome (CRPS), musculoskeletal pain, abdominal pain and headache are also described.
2014-05
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2013-304207" target="_blank" rel="noreferrer">10.1136/archdischild-2013-304207</a>
Rights
Information about rights held in and over the resource
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).
Type
The nature or genre of the resource
Journal Article
2014
Archives of Disease in Childhood
Backlog
Child
Chronic Pain
Disease Management
Howard RF
Humans
Journal Article
Liossi C
Rajapakse D
-
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
Backlog
URL Address
<a href="http://doi.org/10.1016/j.hoc.2009.11.004" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.hoc.2009.11.004</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
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Childhood immune thrombocytopenic purpura: diagnosis and management
Publisher
An entity responsible for making the resource available
Hematology/oncology Clinics Of North America
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Child; Humans; Purpura; Thrombocytopenic; Disease Management; Disease Susceptibility; Idiopathic/diagnosis/etiology/therapy
Creator
An entity primarily responsible for making the resource
Blanchette V; Bolton-Maggs P
Description
An account of the resource
Immune thrombocytopenic purpura (ITP) is an autoimmune disorder characterized by a low circulating platelet count caused by destruction of antibody-sensitized platelets in the reticuloendothelial system. ITP can be classified as childhood versus adult, acute versus chronic, and primary versus secondary. Persistence of thrombocytopenia defines the chronic form of the disorder. Secondary causes of ITP include collagen vascular disorders, immune deficiencies, and some chronic infections. This review focuses on the diagnosis and management of children who have acute and chronic ITP. Emphasis is placed on areas of controversy and new therapies.
2010
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.hoc.2009.11.004" target="_blank" rel="noreferrer">10.1016/j.hoc.2009.11.004</a>
Rights
Information about rights held in and over the resource
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).
Type
The nature or genre of the resource
Journal Article
2010
Backlog
Blanchette V
Bolton-Maggs P
Child
Disease Management
Disease Susceptibility
Hematology/oncology Clinics Of North America
Humans
Idiopathic/diagnosis/etiology/therapy
Journal Article
Purpura
Thrombocytopenic
-
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
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1945-1474.2008.tb01137.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1945-1474.2008.tb01137.x</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 home for medically complex children: the role of hospital programs
Publisher
An entity responsible for making the resource available
Journal For Healthcare Quality
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Child; Humans; home care services; Health Services Needs and Demand; Continuity of Patient Care; Models; Organizational; Disease Management; Hospitalized; Hospital-Based
Creator
An entity primarily responsible for making the resource
Cohen E; Friedman J; Nicholas DB; Adams S; Rosenbaum P
Description
An account of the resource
The medical home is a conceptual model of continuous and comprehensive care provision that is associated with improved outcomes for children with special healthcare needs. Most applications of the medical home have focused on improving primary care services. Despite concerted efforts to apply the medical home concept to the care of children with special healthcare needs, many barriers to its implementation still exist, in particular, for the subset of children with special healthcare needs who are medically complex. Applying the medical home concept to hospital-based care coordination may benefit both children with complex conditions and their families, as well as the community-based providers.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1945-1474.2008.tb01137.x" target="_blank" rel="noreferrer">10.1111/j.1945-1474.2008.tb01137.x</a>
Rights
Information about rights held in and over the resource
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).
Type
The nature or genre of the resource
Journal Article
2008
Adams S
Backlog
Child
Cohen E
Continuity Of Patient Care
Disease Management
Friedman J
Health Services Needs And Demand
home care services
Hospital-Based
Hospitalized
Humans
Journal Article
Journal For Healthcare Quality
Models
Nicholas DB
Organizational
Rosenbaum P
-
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
Backlog
URL Address
<a href="http://doi.org/10.1053/jpdn.2002.126711" target="_blank" rel="noreferrer">http://doi.org/10.1053/jpdn.2002.126711</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 model for transition from pediatric to adult care in cystic fibrosis
Publisher
An entity responsible for making the resource available
Journal Of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Female; Humans; Male; Adult; adolescent; Models; Adolescent Transitions; Cystic Fibrosis/therapy; PST - ppublish; Organizational; London; Continuity of Patient Care; Disease Management; AID - S0882596302000167 [pii]; CRDT- 2002/09/10 10:00; EDAT- 2002/09/10 10:00; MHDA- 2002/10/22 04:00
Creator
An entity primarily responsible for making the resource
Madge S; Bryon M
Description
An account of the resource
With improved medical technology, many chronic medical conditions of childhood are now recognized as conditions of childhood onset. Appropriate treatment of these conditions in the adult patient is required. The pediatric setting is not appropriate in terms of philosophy, service delivery, and relationship with the patient. To design a suitable transition protocol, a survey of teenage patients with cystic fibrosis was carried out and the process was discussed with the relevant clinicians. The results of the survey indicated that young people identified transition to an adult service as necessary and accepted, provided that good preparation is given from the pediatric setting. This article provides a detailed example of a model of transition for cystic fibrosis services to encourage practice and evaluation of provision.
2002
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1053/jpdn.2002.126711" target="_blank" rel="noreferrer">10.1053/jpdn.2002.126711</a>
Rights
Information about rights held in and over the resource
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).
Type
The nature or genre of the resource
Journal Article
2002
Adolescent
Adolescent Transitions
Adult
AID - S0882596302000167 [pii]
Backlog
Bryon M
Continuity Of Patient Care
CRDT- 2002/09/10 10:00
Cystic Fibrosis/therapy
Disease Management
EDAT- 2002/09/10 10:00
Female
Humans
Journal Article
Journal of Pediatric Nursing
London
Madge S
Male
MHDA- 2002/10/22 04:00
Models
Organizational
PST - ppublish
-
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
Backlog
URL Address
<a href="http://doi.org/10.1089/jpm.2004.7.754" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2004.7.754</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
End-of-life content in treatment guidelines for life-limiting diseases
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Humans; United States; Non-U.S. Gov't; Research Support; Palliative Care/standards; Chronic Disease/therapy; Disease Management; Terminal Care/standards; Hospice Care/standards; Practice Guidelines/standards
Creator
An entity primarily responsible for making the resource
Mast KR; Salama M; Silverman GK; Arnold RM
Description
An account of the resource
BACKGROUND: Clinical guidelines are systematically developed statements that influence medical practice, education, and funding. Guidelines represent the consensus of leaders, often based on systematic reviews of the literature, regarding the "state of the art." OBJECTIVE: To assess the degree to which end-of-life care is integrated into nationally developed guidelines for chronic, noncurable, life-limiting diseases. DESIGN: Four compendia were reviewed: The Healthcare Standards Directory ECRI, 2001; the Clinical Practice Guidelines Directory, 2000 edition; the National Guidelines Clearinghouse, (guideline.gov); and the National Library of Medicine's MEDLINE database on the OVID platform for guidelines on nine chronic diseases (chronic obstructive pulmonary disease, end-stage liver disease, amyotrophic lateral sclerosis, congestive heart failure, dementia, cerebrovascular accident, end-stage renal disease, cancer [breast, colon, prostate, lung], and human immunodeficiency virus). They were assessed by two reviewers for end-of-life content in 15 domains (e.g., epidemiology of death, symptom management, spiritual, family roles, and settings of care), the presence of eight specific terms dealing with palliative care, integration of palliative care information into the guideline, and descriptive variables. SETTING/SUBJECTS: Not available. MEASUREMENTS: Each guideline was examined and rated on a 0-2 scale (0, absent content; 1, minimal content; 2, helpful content) using 15 end-of-life content domains. Scores from domains were summed and classified into 3 categories: 4 or less, minimal; 5-12, moderate; and more than 12, significant content. Results: Ten percent of guidelines had significant palliative care content, 64% had minimal content, and 26% had moderate content. The least addressed domains dealt with spirituality, ethics, advocacy and family roles. When guidelines that dealt solely with prevention, acute exacerbations or complications of an illness, or specific treatment modalities were excluded 28% and 16% of these general guidelines (n = 58) had moderate and significant palliative care content, respectively, compared to 24% and 0% of all nongeneral guidelines. Similar results were found when analyzing the data by disease course or treatment focus. Only 14% of guidelines advised physicians to consider palliative care at a specific point in the disease course. Ninety-one percent of the guidelines mentioned death, dying, end of life, mortality, or terminal illness but only 36% mentioned palliation or hospice. CONCLUSION: Current national guidelines on nine chronic, life-limiting illnesses offer little guidance in end-of-life care issues despite a recent increase in attention to this aspect of medical care.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2004.7.754" target="_blank" rel="noreferrer">10.1089/jpm.2004.7.754</a>
Rights
Information about rights held in and over the resource
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).
Type
The nature or genre of the resource
Journal Article
2004
Arnold RM
Backlog
Chronic Disease/therapy
Disease Management
Hospice Care/standards
Humans
Journal Article
Journal of Palliative Medicine
Mast KR
Non-U.S. Gov't
Palliative Care/standards
Practice Guidelines/standards
Research Support
Salama M
Silverman GK
Terminal Care/standards
United States
-
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
Backlog
URL Address
<a href="http://doi.org/10.1136/bmj.327.7425.1219" target="_blank" rel="noreferrer">http://doi.org/10.1136/bmj.327.7425.1219</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
Continuity of care: a multidisciplinary review
Publisher
An entity responsible for making the resource available
Bmj
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Humans; Interprofessional Relations; Non-U.S. Gov't; P.H.S.; Research Support; U.S. Gov't; Miller 2009 BMC HSR Refs; Primary Health Care/organization & administration; Continuity of Patient Care/organization & administration; Disease Management; Patient Care Team/organization & administration; Mental Health Services/organization & administration; Nursing Care/organization & administration; Paintings
Creator
An entity primarily responsible for making the resource
Haggerty JL; Reid RJ; Freeman GK; Starfield B; Adair CE; McKendry R
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmj.327.7425.1219" target="_blank" rel="noreferrer">10.1136/bmj.327.7425.1219</a>
Rights
Information about rights held in and over the resource
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).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2003
2003
Adair CE
Backlog
Bmj
Continuity Of Patient Care/organization & Administration
Disease Management
Freeman GK
Haggerty JL
Humans
Interprofessional Relations
Journal Article
McKendry R
Mental Health Services/organization & administration
Miller 2009 BMC HSR Refs
Non-U.S. Gov't
Nursing Care/organization & administration
P.H.S.
Paintings
Patient Care Team/organization & administration
Primary Health Care/organization & administration
Reid RJ
Research Support
Starfield B
U.S. Gov't
-
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
Backlog
URL Address
<a href="http://doi.org/10.1212/wnl.55.4.468" target="_blank" rel="noreferrer">http://doi.org/10.1212/wnl.55.4.468</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
Practice parameter: screening and diagnosis of autism: report of the Quality Standards Subcommittee of the American Academy of Neurology and the Child Neurology Society
Publisher
An entity responsible for making the resource available
Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Child; Humans; Risk Assessment; Predictive Value of Tests; Nervous System; Preschool; Non-U.S. Gov't; P.H.S.; Research Support; U.S. Gov't; infant; Diagnosis; Differential; Neuropsychological Tests; Disease Management; Developmental Disabilities/diagnosis; Electrophysiology; Asperger Syndrome/diagnosis; Autistic Disorder/diagnosis/genetics; Childhood/diagnosis; Lead Poisoning; Mass Screening/methods/standards
Creator
An entity primarily responsible for making the resource
Filipek PA; Accardo PJ; Ashwal S; Baranek GT; Cook EH; Dawson G; Gordon B; Gravel JS; Johnson CP; Kallen RJ; Levy SE; Minshew NJ; Ozonoff S; Prizant BM; Rapin I; Rogers SJ; Stone WL; Teplin SW; Tuchman RF; Volkmar FR
Description
An account of the resource
Autism is a common disorder of childhood, affecting 1 in 500 children. Yet, it often remains unrecognized and undiagnosed until or after late preschool age because appropriate tools for routine developmental screening and screening specifically for autism have not been available. Early identification of children with autism and intensive, early intervention during the toddler and preschool years improves outcome for most young children with autism. This practice parameter reviews the available empirical evidence and gives specific recommendations for the identification of children with autism. This approach requires a dual process: 1) routine developmental surveillance and screening specifically for autism to be performed on all children to first identify those at risk for any type of atypical development, and to identify those specifically at risk for autism; and 2) to diagnose and evaluate autism, to differentiate autism from other developmental disorders.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1212/wnl.55.4.468" target="_blank" rel="noreferrer">10.1212/wnl.55.4.468</a>
Rights
Information about rights held in and over the resource
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).
Type
The nature or genre of the resource
Journal Article
2000
Accardo PJ
Ashwal S
Asperger Syndrome/diagnosis
Autistic Disorder/diagnosis/genetics
Backlog
Baranek GT
Child
Childhood/diagnosis
Cook EH
Dawson G
Developmental Disabilities/diagnosis
Diagnosis
Differential
Disease Management
Electrophysiology
Filipek PA
Gordon B
Gravel JS
Humans
Infant
Johnson CP
Journal Article
Kallen RJ
Lead Poisoning
Levy SE
Mass Screening/methods/standards
Minshew NJ
Nervous System
Neurology
Neuropsychological Tests
Non-U.S. Gov't
Ozonoff S
P.H.S.
Predictive Value of Tests
Preschool
Prizant BM
Rapin I
Research Support
Risk Assessment
Rogers SJ
Stone WL
Teplin SW
Tuchman RF
U.S. Gov't
Volkmar FR
-
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
Backlog
URL Address
<a href="http://doi.org/10.3928/00904481-20120727-13" target="_blank" rel="noreferrer">http://doi.org/10.3928/00904481-20120727-13</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
Pediatric palliative pain and symptom management
Publisher
An entity responsible for making the resource available
Pediatric Annals
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
Child; Humans; Palliative Care; Pain; Pain Management; Analgesics; Opioid; Disease Management
Creator
An entity primarily responsible for making the resource
Shaw TM
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3928/00904481-20120727-13" target="_blank" rel="noreferrer">10.3928/00904481-20120727-13</a>
Rights
Information about rights held in and over the resource
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).
Type
The nature or genre of the resource
Journal Article
2012
Analgesics
Backlog
Child
Disease Management
Humans
Journal Article
Opioid
Pain
Pain Management
Palliative Care
Pediatric Annals
Shaw TM
-
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
Oncology
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
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1556/650.2017.30815" target="_blank" rel="noreferrer">http://doi.org/10.1556/650.2017.30815</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
[Difficulties in communication with parents of pediatric cancer patients during the transition to palliative care]
Publisher
An entity responsible for making the resource available
Orvosi Hetilap
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Attitude Of Health Personnel; Cancer Palliative Therapy; Childhood Cancer; Communication Barrier; Communication Barriers; Critical Illness/nu [nursing]; Palliative Care/mt [methods]; Parental Attitude; Physician-patient Relations; Article; Cancer Mortality; Cancer Patient; Cancer Therapy; Child; Critical Illness/px [psychology]; Disease Management; Dying; Empathy; Female; Human; Humans; Interpersonal Communication; Medical Expert; Oncologist; Palliative Care/px [psychology]; Parent-child Relations; Parents/px [psychology]; Pediatrician; Psychologist; Quality Of Health Care; Self Defense; Structured Interview
Creator
An entity primarily responsible for making the resource
Nyiro J; Hauser P; Zorgo S; Hegedus K
Description
An account of the resource
INTRODUCTION: Adequate communication by medical personnel is especially important at certain points during the treatment of childhood cancer patients. AIM: To investigate the timing and manner of communication with parents concerning the introduction of palliative care in pediatric oncology. METHOD: Structured interviews, containing 14 questions, were carried out with physicians working in pediatric oncology (n = 22). Codes were generated inductively with the aid of Atlas.ti 6.0 software. RESULTS: Interviews show a tendency of a one-step transition to palliative care following curative therapy. Another expert is usually involved in communication, most likely a psychologist. Regarding communication, there are expressions utilized or avoided, such as expressing clarity, self-defense and empathy. The communication of death and dying was the most contradictory. CONCLUSION: This was the first investigation regarding communication in pediatric palliative care in Hungary. Our results show that a modern perspective of palliative communication is present, but necessitates more time to become entrenched. Orv Hetil. 2017; 158(30): 1175-1181.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1556/650.2017.30815" target="_blank" rel="noreferrer">10.1556/650.2017.30815</a>
Rights
Information about rights held in and over the resource
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
Article
Attitude Of Health Personnel
Cancer Mortality
Cancer Palliative Therapy
Cancer Patient
Cancer Therapy
Child
Childhood Cancer
Communication Barrier
Communication Barriers
Critical Illness/nu [nursing]
Critical Illness/px [psychology]
Disease Management
Dying
Empathy
Female
Hauser P
Hegedus K
Human
Humans
Interpersonal Communication
Medical Expert
Nyiro J
Oncologist
Oncology 2017 List
Orvosi Hetilap
Palliative Care/mt [methods]
Palliative Care/px [psychology]
Parent-child Relations
Parental Attitude
Parents/px [psychology]
Pediatrician
Physician-patient Relations
Psychologist
Quality Of Health Care
Self Defense
Structured Interview
Zorgo S
-
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
December 2017 List
URL Address
<a href="http://doi.org/10.1002/ajmg.a.37807" target="_blank" rel="noreferrer">http://doi.org/10.1002/ajmg.a.37807</a>
Notes
<p>Jacobs, Adam P<br />Subramaniam, Akila<br />Tang, Ying<br />Philips, Joseph B 3rd<br />Biggio, Joseph R<br />Edwards, Rodney K<br />Robin, Nathaniel H</p>
;
<p>Using Smart Source Parsing<br />( (pp 2016. Date of Publication: 01 Oct 2016</p>
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
Trisomy 18: A survey of opinions, attitudes, and practices of neonatologists
Publisher
An entity responsible for making the resource available
American Journal Of Medical Genetics Part A
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Attitude Of Health Personnel; Health Care Surveys; Neonatologists/px [psychology]; Physician Attitude; Practice Patterns Physicians'; Trisomy 18; Trisomy/di [diagnosis]; Adult; Article; Attitude To Abortion; Caucasian; Christian; Chromosomes Human Pair 18; Clinical Practice; Correlation Analysis; Demography; Disease Management; Disease Severity; Family; Female; Fetus Malformation; Human; Humans; Intellectual Impairment; Male; Marriage; Medical Decision Making; Medical Society; Neonatologist; Newborn Care; Normal Human; Outcome Assessment (health Care); Palliative Care; Palliative Therapy; Parental Attitude; Prenatal Diagnosis; Priority Journal; Race Difference; Resuscitation; Survival Rate; Trisomy 18; United States
Creator
An entity primarily responsible for making the resource
Jacobs AP; Subramaniam A; Tang Y; Philips JB 3rd; Biggio JR; Edwards RK; Robin NH
Description
An account of the resource
We conducted a survey-based study of the opinions, attitudes, and management practices of neonatologists across the United States regarding prenatally diagnosed Trisomy 18. The survey was designed based on previously validated surveys of severe fetal anomalies and collected demographic information on participants, as well as their attitudes, and management choices given a series of vignettes beginning in the prenatal period. The survey was sent to 3,143 American Academy of Pediatrics Section on Neonatal-Perinatal Medicine members of which 409 (13%) completed the survey. While the response rate was rather low, our respondent pool was representative of the national neonatologist population. Respondents were predominately white (81%), married (88%), Christian (54%), had children (86%), and were pro-choice in terms of abortion (68%). Eighty-three percent (83%) of respondents thought that trisomy 18 is a lethal condition and 60% thought that treatment is futile. Seventy-five percent (75%) expected that the best neurodevelopmental outcome in the case of infant survival would be profound intellectual disability. Regarding neonatal care, 95% stated that they would recommend palliative care only. Ninety-five percent (95%) would never recommend or recommend only if asked full code resuscitation for a neonate with full trisomy 18, yet, 44% would comply partially or in full with a full code request for resuscitation measures. The demographic features that correlated most significantly with these responses were clinician race and years in practice. The attitudes toward and management of infants affected with trisomy 18 seem to be largely driven by parental attitudes and wishes. � 2016 Wiley Periodicals, Inc.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/ajmg.a.37807" target="_blank" rel="noreferrer">10.1002/ajmg.a.37807</a>
Rights
Information about rights held in and over the resource
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).
2016
Adult
American Journal of Medical Genetics Part A
Article
Attitude Of Health Personnel
Attitude To Abortion
Biggio JR
Caucasian
Christian
Chromosomes Human Pair 18
Clinical Practice
Correlation Analysis
December 2017 List
Demography
Disease Management
Disease Severity
Edwards RK
Family
Female
Fetus Malformation
Health Care Surveys
Human
Humans
Intellectual Impairment
Jacobs AP
Male
Marriage
Medical Decision Making
Medical Society
Neonatologist
Neonatologists/px [psychology]
Newborn Care
Normal Human
Outcome Assessment (health Care)
Palliative Care
Palliative Therapy
Parental Attitude
Philips JB 3rd
Physician Attitude
Practice Patterns Physicians'
Prenatal Diagnosis
Priority Journal
Race Difference
Resuscitation
Robin NH
Subramaniam A
Survival Rate
Tang Y
Trisomy 18
Trisomy/di [diagnosis]
United States
-
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
March 2016 List
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
Development And Evaluation Of A Palliative Care Curriculum For Cystic Fibrosis Healthcare Providers.
Publisher
An entity responsible for making the resource available
Journal Of Cystic Fibrosis
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Attitude Of Health Personnel; Curriculum; Cystic Fibrosis/psychology; Cystic Fibrosis/therapy; Disease Management; Female; Health Personnel/education; Health Personnel/psychology; Humans; Male; Middle Aged; Needs Assessment; Palliative Care/methods; Palliative Care/psychology; Quality Of Life; Surveys And Questionnaires; Terminal Care/methods; Terminal Care/psychology; United States
Cystic Fibrosis; Education; End-of-life Care; Palliative Care
Creator
An entity primarily responsible for making the resource
Linnemann RW; O’Malley PJ; Friedman D; Georgiopoulos AM; Buxton D; Altstein
LL
Description
An account of the resource
BACKGROUND:
Primary palliative care refers to basic skills that all healthcare providers can employ to improve quality of life for patients at any stage of disease. Training in these core skills is not commonly provided to clinicians caring for cystic fibrosis (CF) patients. The objective of this study was to assess change in comfort with core skills among care team members after participation in CF-specific palliative care training focused on management of burdensome symptoms and difficult conversations.
METHODS:
A qualitative needs assessment was performed to inform the development of an 18-hour curriculum tailored to the chronicity and complexity of CF care. A 32-question pre- and post-course survey assessed CF provider comfort with the targeted palliative care skills in 5 domains using a 5-point Likert scale (1=very uncomfortable, 3=neutral, 5=very comfortable).
RESULTS:
Among course participants (n=16), mean overall comfort score increased by 0.9, from 3 (neutral) to 3.9 (comfortable) (p<0.001). Mean comfort level increased significantly (range 0.8 to 1.4) in each skill domain: use of supportive care resources, pain management, non-pain symptom management, communication, and psychosocial skills.
CONCLUSIONS:
CF-specific palliative care training was well received by participants and significantly improved self-assessed comfort with core skills.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1016/j.jcf.2015.03.005
Rights
Information about rights held in and over the resource
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).
2016
Altstein
LL
Attitude Of Health Personnel
Buxton D
Curriculum
Cystic Fibrosis
Cystic Fibrosis/psychology
Cystic Fibrosis/therapy
Disease Management
Education
End-of-life Care
Female
Friedman D
Georgiopoulos AM
Health Personnel/education
Health Personnel/psychology
Humans
Journal of Cystic Fibrosis
Linnemann RW
Male
March 2016 List
Middle Aged
Needs Assessment
O’Malley PJ
Palliative Care
Palliative Care/methods
Palliative Care/psychology
Quality Of Life
Surveys And Questionnaires
Terminal Care/methods
Terminal Care/psychology
United States