1
40
237
-
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 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
Children's Experiences Of Epilepsy: A Systematic Review Of Qualitative Studies
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Systematic Review; Epilepsy; Pediatrics; Qualitative Research; Children & Youth; Quality Of Life
Creator
An entity primarily responsible for making the resource
L Chong
Description
An account of the resource
CONTEXT:
Epilepsy is a common and severe neurologic disease associated with increased mortality, seizure-related injury, and adverse psychological and quality-of-life outcomes.
OBJECTIVE:
To describe the perspectives of children and adolescents with epilepsy.
DATA SOURCES:
Medline, Embase, PsycINFO, and CINAHL from inception to August 2015.
STUDY SELECTION:
Qualitative studies on children's experiences of epilepsy.
DATA EXTRACTION:
Results from primary studies. We used thematic synthesis to analyze the findings.
RESULTS:
Forty-three articles involving 951 participants aged 3 to 21 years across 21 countries were included. We identified 6 themes: loss of bodily control (being overtaken, susceptibility to physical harm, fragility of the brain, alertness to mortality, incapacitating fatigue), loss of privacy (declarative disease, humiliating involuntary function, unwanted special attention, social embarrassment of medicine-taking), inescapable inferiority and discrimination (vulnerability to prejudice, inability to achieve academically, consciousness of abnormality, parental shame, limiting social freedom), therapeutic burden and futility (unattainable closure, financial burden, overwhelming life disruption, exhaustion from trialing therapies, insurmountable side effects, awaiting a fabled remission), navigating health care (empowerment through information, valuing empathetic and responsive care, unexpected necessity of transition, fragmented and inconsistent care), and recontextualizing to regain normality (distinguishing disease from identity, taking ownership, gaining perspective and maturity, social and spiritual connectedness).
LIMITATIONS:
Non-English articles were excluded.
CONCLUSIONS:
Children with epilepsy experience vulnerability, disempowerment, and discrimination. Repeated treatment failure can raise doubt about the attainment of remission. Addressing stigma, future independence, and fear of death may improve the overall well-being of children with epilepsy.
Identifier
An unambiguous reference to the resource within a given context
doi: 10.1542/peds.2016-0658
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
August 2016 List
Children & Youth
Epilepsy
L Chong
Pediatrics
Qualitative Research
Quality Of Life
Systematic Review
-
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 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
Risk Stratification For Opioid Misuse In Children, Adolescents, And Young Adults: A Quality Improvement Project
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Pediatrics; Drug Use; Narcotics; Young Adult; Teenagers; Children & Youth
Creator
An entity primarily responsible for making the resource
Thienprayoon R; Porter K; Tate M; Ashby M; Meyer M
Description
An account of the resource
BACKGROUND:
The Pediatric Palliative and Comfort Care Team (PACT) at Cincinnati Children's Hospital Medical Center (CCHMC) provides opioids to a large population of patients in the ambulatory setting. Before this project, PACT had no reliable system to risk stratify patients for opioid misuse.
METHODS:
The global aim was safe opioid prescribing by the palliative care team. The specific, measurable, achievable, realistic, and timely aim was as follows: "In patients who present for follow up with PACT, we will use the "opioid bundle" to increase risk stratification for opioid misuse from 0% to 90% over 5 months." The opioid bundle includes a urine drug screen, Ohio Automated Rx Reporting System report, pill count, and screening history for drug abuse and mental health disorders. The setting was multiple CCHMC ambulatory clinics. Participants included all PACT members.
RESULTS:
Since implementing the new system, we have increased risk stratification for opioid misuse among outpatients from 0% to >90%. Results have been sustained for 12 months. Key processes have become reliable: obtaining informed consent and controlled substance agreements for all new patients and obtaining the opioid bundle to enable risk stratification in a consistent and timely fashion. A total of 34% of patients have been stratified as high risk, and an additional 27% have been stratified as moderate risk.
CONCLUSIONS:
A system to ensure safe opioid prescribing practices to all patients is critical for providers. Identifying key processes and executing them reliably has enabled the palliative care team at CCHMC to risk stratify >90% of patients receiving opioids in the ambulatory setting for opioid misuse.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1542/peds.2016-0258
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
Ashby M
Children & Youth
December 2016 List
Drug Use
Meyer M
Narcotics
Pediatrics
Porter K
Tate M
Teenagers
Thienprayoon R
Young Adult
-
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 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
A Core Outcome Set For Children With Feeding Tubes And Neurologic Impairment: A Systematic Review
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Brain-damaged Children; Home Enteral Nutrition; Quality Of Life; Video-assisted Gastrostomy; Percutaneous Endoscopic Gastrostomy; Randomized Controlled-trials; Severe Cerebral-palsy; Single-center Experience; Clinical-trials; Pediatrics; Gastroesophageal-reflux; Neurologic Manifestations Of General Diseases; Research; Child; Health Aspects
Creator
An entity primarily responsible for making the resource
Mufiza Z Kapadia; Kariym C Joachim; Chrinna Balasingham; Eyal Cohen; Mahant Sanjay; Katherine Nelson; Jonathon L Maguire; Astrid Guttmann; Martin Offringa
Description
An account of the resource
CONTEXT: Uncertainty exists about the impacts of feeding tubes on neurologically impaired children. Core outcome sets (COS) standardize outcome selection, definition, measurement, and reporting.
OBJECTIVE: To synthesize an evidence base of qualitative data on all outcomes selected and/or reported for neurologically impaired children 0 to 18 years living with gastrostomy/gastrojejunostomy tubes.
DATA SOURCES: Medline, Embase, and Cochrane Register databases searched from inception to March 2014.
STUDY SELECTION: Articles examining health outcomes of neurologically impaired children living with feeding tubes.
DATA EXTRACTION: Outcomes were extracted and assigned to modified Outcome Measures in Rheumatology 2.0 Filter core areas; death, life impact, resource use, pathophysiological manifestations, growth and development.
RESULTS: We identified 120 unique outcomes with substantial heterogeneity in definition, measurement, and frequency of selection and/or reporting: “pathophysiological manifestation” outcomes (n = 83) in 79% of articles; “growth and development” outcomes (n = 13) in 55% of articles; “death” outcomes (n = 3) and “life impact” outcomes (n = 17) in 39% and 37% of articles, respectively; “resource use” outcomes (n = 4) in 14%. Weight (50%), gastroesophageal reflux (35%), and site infection (25%) were the most frequently reported outcomes.
LIMITATIONS: We were unable to investigate effect size of outcomes because quantitative data were not collected.
CONCLUSIONS: The paucity of outcomes assessed for life impact, resource use and death hinders meaningful evidence synthesis. A COS could help overcome the current wide heterogeneity in selection and definition. These results will form the basis of a consensus process to produce a final COS.
Identifier
An unambiguous reference to the resource within a given context
10.1542/peds.2015-3967
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
Astrid Guttmann
Brain-damaged Children
Child
Chrinna Balasingham
Clinical-trials
Eyal Cohen
Gastroesophageal-reflux
Health Aspects
Home Enteral Nutrition
Jonathon L Maguire
July 2016 List
Kariym C Joachim
Katherine Nelson
Mahant Sanjay
Martin Offringa
Mufiza Z Kapadia
Neurologic Manifestations Of General Diseases
Pediatrics
Percutaneous Endoscopic Gastrostomy
Quality Of Life
Randomized Controlled-trials
Research
Severe Cerebral-palsy
Single-center Experience
Video-assisted Gastrostomy
-
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 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
Can Parents Refuse A Potentially Lifesaving Transplant For Severe Combined Immunodeficiency?
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Pediatrics; Life-saving Apparatus; Severe Combined Immunodeficiency; Research; Parents; Analysis; Methods
Creator
An entity primarily responsible for making the resource
Andrew S Nickels; G Douglas Myers; Liza-Marie Johnson; Avni Joshi; Richard R Sharp; Lantos J
Description
An account of the resource
If untreated, most children with severe combined immunodeficiency disorder (SCID) will die of complications of infection within the first 2 years of life. Early hematopoietic stem cell transplant (HSCT) is the current standard of care for this disease. Although potentially lifesaving, prognosis of HSCT in SCID is variable depending on a number of host and donor factors. Of the survivors, many develop secondary problems such as chronic graft-versus-host disease or even second malignancies. Posttransplant care is complex and requires great effort from parents to adhere to difficult treatment regimens. In this article, we address the difficult ethical question of what to do if parents choose not to have their child with SCID undergo HSCT but prefer palliative care.
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
Analysis
Andrew S Nickels
Avni Joshi
G Douglas Myers
July 2016 List
Lantos J
Life-saving Apparatus
Liza-Marie Johnson
Methods
Parents
Pediatrics
Research
Richard R Sharp
Severe Combined Immunodeficiency
-
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 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
Supporting The Grieving Child And Family
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Caregivers; Pediatrics; Grief; Counseling; Trauma; Children & Youth
Creator
An entity primarily responsible for making the resource
David J Schonfeld; Thomas Demaria
Description
An account of the resource
The death of someone close to a child often has a profound and lifelong effect on the child and results in a range of both short- and long-term reactions. Pediatricians, within a patient-centered medical home, are in an excellent position to provide anticipatory guidance to caregivers and to offer assistance and support to children and families who are grieving. This clinical report offers practical suggestions on how to talk with grieving children to help them better understand what has happened and its implications and to address any misinformation, misinterpretations, or misconceptions. An understanding of guilt, shame, and other common reactions, as well an appreciation of the role of secondary losses and the unique challenges facing children in communities characterized by chronic trauma and cumulative loss, will help the pediatrician to address factors that may impair grieving and children’s adjustment and to identify complicated mourning and situations when professional counseling is indicated. Advice on how to support children’s participation in funerals and other memorial services and to anticipate and address grief triggers and anniversary reactions is provided so that pediatricians are in a better position to advise caregivers and to offer consultation to schools, early education and child care facilities, and other child congregate care sites. Pediatricians often enter their profession out of a profound desire to minimize the suffering of children and may find it personally challenging when they find themselves in situations in which they are asked to bear witness to the distress of children who are acutely grieving. The importance of professional preparation and self-care is therefore emphasized, and resources are recommended.
Identifier
An unambiguous reference to the resource within a given context
doi: 10.1542/peds.2016-2147
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
Caregivers
Children & Youth
Counseling
David J Schonfeld
Grief
Pediatrics
September 2016 List
Thomas Demaria
Trauma
-
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
Notes
<p>Dallas, Ronald H Kimmel, Allison Wilkins, Megan L Rana, Sohail Garcia, Ana Cheng, Yao I Wang, Jichuan Lyon, Maureen E Adolescent Palliative Care Consortium. Using Smart Source Parsing Dec e20161854 peds.2016-1854</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
Acceptability Of Family-centered Advanced Care Planning For Adolescents With Hiv
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adolescent Health Services/sn [statistics & Numerical Data]; Advance Care Planning; Family/px [psychology]; Hiv Infections/th [therapy]; Patient Acceptance Of Health Care/sn [statistics & Numerical Data]; Adolescent; Family Nursing; Female; Hiv Infections/px [psychology]; Humans; Male; Prospective Studies; Surveys And Questionnaires; United States; Young Adult
Creator
An entity primarily responsible for making the resource
Dallas R H; Kimmel A; Wilkins M L; Rana S; Garcia A; Cheng Y I; Wang J; Lyon M; Adolescent Palliative Care Consortium
Description
An account of the resource
BACKGROUND AND OBJECTIVE: Small pilot studies support the appropriateness of engaging adolescents with chronic or life-limiting illnesses in pediatric advance care planning (pACP). We do not yet know if pACP is acceptable, feasible, and worthwhile, even if emotionally intense, in a fully powered randomized controlled trial. METHODS: We conducted a prospective 2-arm randomized controlled trial at 6 US urban hospitals. Adolescent/family member dyads were randomized to receive the 1-session-a-week 3-session FAmily-CEntered Advance Care Planning (FACE) pACP intervention (1, ACP Survey; 2, Goals of Care Conversation/Treatment Preferences; 3, Completion of Advance Directive) or active comparator (1, Developmental History; 2, Safety Tips; 3, Nutrition/Exercise). The Satisfaction Questionnaire was administered to participants independently after each session by a blinded research assistant. RESULTS: We enrolled 53% of eligible participants and intervened with 97 adolescent/family dyads. Adolescents ranged in age from 14 to 21 years; 54% were male individuals; 93% African American; and 73% perinatally infected. Attendance was 99% for all 3 sessions in each arm. At session 3, FACE adolescents and family dyad members, respectively, found the session useful (98%, 98%) and helpful (98%, 100%), despite feelings of sadness (25%, 17%). FACE adolescents' improvement in the total subscale A score (useful, helpful, like a load off my mind, satisfied, something I needed to do, courageous, worthwhile) was better than control adolescents at session 3 (beta = 1.16, P = .02). There were no adverse events. CONCLUSIONS: FACE enabled worthwhile conversations, while simultaneously eliciting intense emotions. No participants withdrew, 99% of those enrolled completed each session, and there were no adverse events, evidence of pACP's feasibility, acceptability, and safety.
Identifier
An unambiguous reference to the resource within a given context
10.1542/peds.2016-1854
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
Adolescent
Adolescent Health Services/sn [statistics & Numerical Data]
Adolescent Palliative Care Consortium
Advance Care Planning
Cheng Y I
Dallas R H
Family Nursing
Family/px [psychology]
Female
Garcia A
Hiv Infections/px [psychology]
Hiv Infections/th [therapy]
Humans
Kimmel A
Lyon M
Male
Patient Acceptance Of Health Care/sn [statistics & Numerical Data]
Pediatrics
Prospective Studies
Rana S
September 2017 List
Surveys And Questionnaires
United States
Wang J
Wilkins M L
Young Adult
-
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 2017 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
Risk Stratification For Opioid Misuse In Children, Adolescents, And Young Adults: A Quality Improvement Project
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
Thienprayoon R; Porter K; Tate M; Ashby M; Meyer M
Description
An account of the resource
BACKGROUND: The Pediatric Palliative and Comfort Care Team (PACT) at Cincinnati Children's Hospital Medical Center (CCHMC) provides opioids to a large population of patients in the ambulatory setting. Before this project, PACT had no reliable system to risk stratify patients for opioid misuse. METHODS: The global aim was safe opioid prescribing by the palliative care team. The specific, measurable, achievable, realistic, and timely aim was as follows: "In patients who present for follow up with PACT, we will use the "opioid bundle" to increase risk stratification for opioid misuse from 0% to 90% over 5 months." The opioid bundle includes a urine drug screen, Ohio Automated Rx Reporting System report, pill count, and screening history for drug abuse and mental health disorders. The setting was multiple CCHMC ambulatory clinics. Participants included all PACT members. RESULTS: Since implementing the new system, we have increased risk stratification for opioid misuse among outpatients from 0% to >90%. Results have been sustained for 12 months. Key processes have become reliable: obtaining informed consent and controlled substance agreements for all new patients and obtaining the opioid bundle to enable risk stratification in a consistent and timely fashion. A total of 34% of patients have been stratified as high risk, and an additional 27% have been stratified as moderate risk. CONCLUSIONS: A system to ensure safe opioid prescribing practices to all patients is critical for providers. Identifying key processes and executing them reliably has enabled the palliative care team at CCHMC to risk stratify >90% of patients receiving opioids in the ambulatory setting for opioid misuse.
Identifier
An unambiguous reference to the resource within a given context
10.1542/peds.2016-0258
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
Ashby M
February 2017 List
Meyer M
Pediatrics
Porter K
Tate M
Thienprayoon 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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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 2017 List
URL Address
<a class="aap-doi-text" href="https://doi.org/10.1542/peds.2016-2956" target="_blank" rel="noreferrer">https://doi.org/10.1542/peds.2016-2956</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
Children's End-of-life Health Care Use And Cost
Publisher
An entity responsible for making the resource available
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
Cause Of Death; Child; Health Care Costs; Only Child; Terminal Care
Creator
An entity primarily responsible for making the resource
Widger K; Seow H; Rapoport A; Chalifoux M; Tanuseputro P
Description
An account of the resource
BACKGROUND AND OBJECTIVES: Heath care use and cost for children at the end of life is not well documented across the multiple sectors where children receive care. The study objective was to examine demographics, location, cause of death, and health care use and costs over the last year of life for children aged 1 month to 19 years who died in Ontario, Canada. METHODS: We conducted a population-based retrospective cohort study using administrative databases to determine the characteristics of and health care costs by age group and cause of death over a 3-year period from 2010 to 2013. RESULTS: In our cohort of 1620 children, 41.6% died of a chronic disease with wide variation across age groups. The mean health care cost over the last year of life was $78 332 (Canadian) with a median of $18 450, reflecting the impact of high-cost decedents. The mean costs for children with chronic or perinatal/congenital illnesses nearly tripled over the last 4 months of life. The majority of costs (67.0%) were incurred in acute care settings, with 88.0% of children with a perinatal/congenital illness and 79.7% with a chronic illness dying in acute care. Only 33.4% of children received home care in the last year of life. CONCLUSIONS: Children in Ontario receive the majority of their end-of-life care in acute care settings at a high cost to the health care system. Initiatives to optimize care should focus on early discussion of the goals of care and assessment of whether the care provided fits with these goals.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1542/peds.2016-2956" target="_blank" rel="noreferrer">10.1542/peds.2016-2956</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
Cause Of Death
Chalifoux M
Child
Health Care Costs
May 2017 List
Only Child
Pediatrics
Rapoport A
Seow H
Tanuseputro P
Terminal Care
Widger K
-
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 2017 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
Hospital Use In The Last Year Of Life For Children With Life-threatening Complex Chronic Conditions
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Creator
An entity primarily responsible for making the resource
Ananth P; Melvin P; Feudtner C; Wolfe J; Berry JG
Description
An account of the resource
BACKGROUND AND OBJECTIVES: Although many adults experience resource-intensive and costly health care in the last year of life, less is known about these health care experiences in children with life-threatening complex chronic conditions (LT-CCCs). We assessed hospital resource use in children by type and number of LT-CCCs. METHODS: A retrospective analysis of 1252 children with LT-CCCs, ages 1 to 18 years, who died in 2012 within 40 US children’s hospitals of the Pediatric Health Information System database. LT-CCCs were identified with International Classification of Diseases, 9th Revision, Clinical Modification codes. Using generalized linear models, we assessed hospital admissions, days, costs, and interventions (mechanical ventilation and surgeries) in the last year of life by type and number of LT-CCCs. RESULTS: In the last year of life, children with LT-CCCs experienced a median of 2 admissions (interquartile range [IQR] 1–5), 27 hospital days (IQR 7–84), and $142 562 (IQR $45 270–$410 087) in hospital costs. During the terminal admission, 76% (n = 946) were mechanically ventilated; 36% (n = 453) underwent surgery. Hospital use was greatest (P < .001) among children with hematologic/immunologic conditions (99 hospital days [IQR 51–146]; cost = $504 145 [IQR $250 147–$879 331]) and children with ≥3 LT-CCCs (75 hospital days [IQR 28–132]; cost = $341 222 [IQR $146 698–$686 585]). CONCLUSIONS: Hospital use for children with LT-CCCs in the last year of life varies significantly across the type and number of conditions. Children with hematologic/immunologic or multiple conditions have the greatest hospital use. This information may be useful for clinicians striving to improve care for children with LT-CCCs nearing the end of life.
Identifier
An unambiguous reference to the resource within a given context
10.1542/peds.2015-0260
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).
2015
Ananth P
Berry JG
Feudtner C
July 2017 List
Melvin P
Pediatrics
Wolfe J
-
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 2017 List
URL Address
<a href="http://pediatrics.aappublications.org/content/early/2016/10/06/peds.2016-0791" target="_blank" rel="noreferrer">http://pediatrics.aappublications.org/content/early/2016/10/06/peds.2016-0791</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 AAP Resilience in the Face of Grief and Loss Curriculum
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
Serwint JR; Bostwick S; Burke AE; Church A; Gogo A; Hofkosh D; King M; Linebarger J; McCabe ME; Moon M; Osta A; Rana DT; Sahler OJ; Smith K; Rivera F; Baldwin CD
Description
An account of the resource
A career in pediatrics can bring great joy and satisfaction. It can also be challenging and lead some providers to manifest burnout and depression. A curriculum designed to help pediatric health providers acquire resilience and adaptive skills may be a key element in transforming times of anxiety and grief into rewarding professional experiences. The need for this curriculum was identified by the American Academy of Pediatrics Section on Medical Students, Residents and Fellowship Trainees. A working group of educators developed this curriculum to address the professional attitudes, knowledge, and skills essential to thrive despite the many stressors inevitable in clinical care. Fourteen modules incorporating adult learning theory were developed. The first 2 sections of the curriculum address the knowledge and skills to approach disclosure of life-altering diagnoses, and the second 2 sections focus on the provider’s responses to difficult patient care experiences and their needs to develop strategies to maintain their own well-being. This curriculum addresses the intellectual and emotional characteristics patient care medical professionals need to provide high-quality, compassionate care while also addressing active and intentional ways to maintain personal wellness and resilience.
Identifier
An unambiguous reference to the resource within a given context
<a class="aap-doi-text" href="https://doi.org/10.1542/peds.2016-0791">10.1542/peds.2016-0791</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).
Subject
The topic of the resource
Adaptation Psychological;
Adult;
Attitude of Health Personnel;
Attitude to Death;
Burnout Professional/prevention & control;
Clinical Competence;
Curriculum;
Education Medical, Graduate/methods;
Female;
Grief;
Humans;
Internship and Residency/methods;
Male;
Pediatrics/education;
Societies Medical;
United States
2016
Adaptation Psychological
Adult
Attitude Of Health Personnel
Attitude To Death
August 2017 List
Baldwin CD
Bostwick S
Burke AE
Burnout Professional/prevention & Control
Church A
Clinical Competence
Curriculum
Education Medical Graduate/methods
Female
Gogo A
Grief
Hofkosh D
Humans
Internship And Residency/metho
King M
Linebarger J
McCabe ME
Moon M
Osta A
Pediatrics
Rana DT
Rivera F
Sahler OJ
Serwint JR
Smith K
-
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
November 2017 List
URL Address
<a href="http://pediatrics.aappublications.org/content/early/2017/09/26/peds.2017-1662.abstract" target="_blank" rel="noreferrer">http://pediatrics.aappublications.org/content/early/2017/09/26/peds.2017-1662.abstract</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
Disparities in Pediatric Palliative Care: An Opportunity to Strive for Equity
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Creator
An entity primarily responsible for making the resource
Bona K; Wolfe J
Description
An account of the resource
Abbreviations:EOL — end of lifePPC — pediatric palliative careThe importance of pediatric palliative care (PPC) for children with cancer has been broadly embraced over the last 2 decades in response to compelling evidence of high symptom burden and suffering throughout the continuum of care.1–3 Yet, how best to evaluate the impact of PPC remains a methodological challenge in a field focused on patient-reported outcomes, including symptom alleviation and goal-concordant care.In adult oncology, the benchmarking of palliative care has been facilitated by data demonstrating that end-of-life (EOL) care intensity (which is evaluable with administrative data, such as hospitalization and receipt of ICU care) is discordant with the wishes of adult patients with cancer.4,5 Similar benchmarking in pediatrics has been limited by an unknown correlation of care intensity with family goals and an absence of methodology for pediatric-specific administrative data. In this issue of Pediatrics, Johnston et al6 provide the first US population-based data … Address correspondence to Kira Bona, MD, MPH, Department of Pediatric Oncology, Dana-Farber Cancer Institute, 450 Brookline Ave, Boston, MA 02115. E-mail: kira.bona{at}childrens.harvard.edu
Identifier
An unambiguous reference to the resource within a given context
<b></b><a class="aap-doi-text" href="https://doi.org/10.1542/peds.2017-1662" target="_blank" rel="noreferrer">10.1542/peds.2017-1662</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
Bona K
November 2017 List
Pediatrics
Wolfe J
-
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
November 2017 List
Notes
<p>1098-4275<br />Hauer, Julie<br />Houtrow, Amy J<br />Section on hospice and palliative medicine, council on children with disabilities<br />Journal Article<br />Review<br />United States<br />Pediatrics. 2017 Jun;139(6). pii: e20171002. doi: 10.1542/peds.2017-1002.</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
Pain Assessment and Treatment in Children With Significant Impairment of the Central Nervous System
Publisher
An entity responsible for making the resource available
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
Analgesics/ Therapeutic Use; Autistic Disorder/ Complications; Benzodiazepines/therapeutic Use; Cerebral Palsy/ Complications; Child; Conflicts Of Interest To Disclose.; Drug Therapy Combination; Humans; Intellectual Disability/ Complications; Pain/complications/diagnosis/ Drug Therapy; Pain Management/ Methods; Pain Measurement/ Methods
Creator
An entity primarily responsible for making the resource
Hauer J; Houtrow AJ
Description
An account of the resource
Pain is a frequent and significant problem for children with impairment of the central nervous system, with the highest frequency and severity occurring in children with the greatest impairment. Despite the significance of the problem, this population remains vulnerable to underrecognition and undertreatment of pain. Barriers to treatment may include uncertainty in identifying pain along with limited experience and fear with the use of medications for pain treatment. Behavioral pain-assessment tools are reviewed in this clinical report, along with other strategies for monitoring pain after an intervention. Sources of pain in this population include acute-onset pain attributable to tissue injury or inflammation resulting in nociceptive pain, with pain then expected to resolve after treatment directed at the source. Other sources can result in chronic intermittent pain that, for many, occurs on a weekly to daily basis, commonly attributed to gastroesophageal reflux, spasticity, and hip subluxation. Most challenging are pain sources attributable to the impaired central nervous system, requiring empirical medication trials directed at causes that cannot be identified by diagnostic tests, such as central neuropathic pain. Interventions reviewed include integrative therapies and medications, such as gabapentinoids, tricyclic antidepressants, alpha-agonists, and opioids. This clinical report aims to address, with evidence-based guidance, the inherent challenges with the goal to improve comfort throughout life in this vulnerable group of children.
Identifier
An unambiguous reference to the resource within a given context
10.1542/peds.2017-1002
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
Analgesics/ Therapeutic Use
Autistic Disorder/ Complications
Benzodiazepines/therapeutic Use
Cerebral Palsy/ Complications
Child
Conflicts Of Interest To Disclose.
Drug Therapy Combination
Hauer J
Houtrow AJ
Humans
Intellectual Disability/ Complications
November 2017 List
Pain Management/ Methods
Pain Measurement/ Methods
Pain/complications/diagnosis/ Drug Therapy
Pediatrics
-
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
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>
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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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
An entity primarily responsible for making the resource
Keim-Malpass J; Lindley LC
Identifier
An unambiguous reference to the resource within a given context
10.1542/peds.2017-1134
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
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
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
November 2017 List
Notes
<p>1098-4275<br />Sisk, Bryan A<br />DuBois, James<br />Kodish, Eric<br />Wolfe, Joanne<br />Feudtner, Chris<br />Journal Article<br />United States<br />Pediatrics. 2017 Jun;139(6). pii: e20170234. doi: 10.1542/peds.2017-0234. Epub 2017 May 12.</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
Navigating Decisional Discord: The Pediatrician's Role When Child and Parents Disagree
Publisher
An entity responsible for making the resource available
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
Decision Making; Dissent And Disputes; Parental Consent; Parent-child Relations; Pediatricians; Physician's Role; Adolescent; Child; Consensus; Female; Humans; Male; Mental Competency; Models Psychological
Creator
An entity primarily responsible for making the resource
Sisk BA; DuBois J; Kodish E; Wolfe J; Feudtner C
Description
An account of the resource
From the time when children enter the preteen years onward, pediatric medical decision-making can entail a complex interaction between child, parents, and pediatrician. When the child and parents disagree regarding medical decisions, the pediatrician has the challenging task of guiding the family to a final decision. Unresolved discord can affect family cohesiveness, patient adherence, and patient self-management. In this article, we outline 3 models for the pediatrician's role in the setting of decisional discord: deference, advocative, and arbitrative. In the deference model, the pediatrician prioritizes parental decision-making authority. In the advocative model, the pediatrician advocates for the child's preference in decision-making so long as the child's decision is medically reasonable. In the arbitrative model, the pediatrician works to resolve the conflict in a balanced fashion. Although each model has advantages and disadvantages, the arbitrative model should serve as the initial model in nearly all settings. The arbitrative model is likely to reach the most beneficial decision in a manner that maintains family cohesiveness by respecting the authority of parents and the developing autonomy of children. We also highlight, however, occasions when the deference or advocative models may be more appropriate. Physicians should keep all 3 models available in their professional toolkit and develop the wisdom to deploy the right model for each particular clinical situation.
Identifier
An unambiguous reference to the resource within a given context
10.1542/peds.2017-0234
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
Adolescent
Child
Consensus
Decision Making
Dissent And Disputes
DuBois J
Female
Feudtner C
Humans
Kodish E
Male
Mental Competency
Models Psychological
November 2017 List
Parent-child Relations
Parental Consent
Pediatricians
Pediatrics
Physician's Role
Sisk BA
Wolfe J
-
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
November 2017 List
URL Address
<a href="http://pediatrics.aappublications.org/content/early/2017/08/24/peds.2017-1905" target="_blank" rel="noreferrer">http://pediatrics.aappublications.org/content/early/2017/08/24/peds.2017-1905</a>
Notes
<p>Using Smart Source Parsing<br />( (no pagination), Article Number: e20171905. Date of Publication: September 2017</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
Guidance on forgoing life-sustaining medical treatment
Publisher
An entity responsible for making the resource available
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
Apparent Life Threatening Event/th [therapy]; Life-sustaining Medical Treatment; Medical Procedures; Practice Guideline; Article; Awareness; Caregiver; Child Abuse; Child Care; Clinical Decision Making; Comatose Patient; Consensus; Consultation; Critical Illness/th [therapy]; Death; Death By Neurologic Criteria; Developmental Disorder/th [therapy]; Disease Burden; Disease Course; Ethical Decision Making; Extremely Low Gestational Age; Family Decision Making; Family Stress; Foster Care; Gestational Age; Goal Attainment; Health Belief; High Risk Population; Human; Hydration; Imminent Death; Informed Consent; Intensive Care; Interpersonal Communication; Legal Aspect; Medical Ethics; Medical Expert; Medical Information; Medically Administered Nutrition And Hydration; Medical Specialist; Neglect; Neurologic Disease/di [diagnosis]; Nutrition; Oxygenation; Pain/th [therapy]; Palliative Therapy; Patient Care Planning; Pediatrician; Priority Journal; Prognosis; Quality Of Life; Resuscitation; Shared Decision Making; Social Support; Spiritual Care; Survival; Teamwork; Terminal Care; Tissue Perfusion; Uncertain Prognosis
Creator
An entity primarily responsible for making the resource
Weise KL; Okun AL; Carter BS; Christian CW; Katz AL; Laventhal N; MacAuley RC; Moon MR; Opel DJ; Statter MB; Davies D; Dell ML; Diekema DS; Klipstein S; Elster N; Rivera F; Feudtner C; Boss RD; Hauer JM; Humphrey LM; Klick J; Linebarger JS; Parker S; Lord B; Imaizumi S; Guinn-Jones M; Flaherty EG; Gavril AR; Idzerda SM; Laskey A; Legano LA; Leventhal JM; Fortson BL; MacMillan H; Stedt E; Hurley TP
Description
An account of the resource
Pediatric health care is practiced with the goal of promoting the best interests of the child. Treatment generally is rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens to the child leads to an assessment that forgoing life-sustaining medical treatment (LSMT) is ethically supportable or advisable. Parents are given wide latitude in decision-making concerning end-of-life care for their children in most situations. Collaborative decision-making around LSMT is improved by thorough communication among all stakeholders, including medical staff, the family, and the patient, when possible, throughout the evolving course of the patient's illness. Clear communication of overall goals of care is advised to promote agreed-on plans, including resuscitation status. Perceived disagreement among the team of professionals may be stressful to families. At the same time, understanding the range of professional opinions behind treatment recommendations is critical to informing family decision-making. Input from specialists in palliative care, ethics, pastoral care, and other disciplines enhances support for families and medical staff when decisions to forgo LSMT are being considered. Understanding specific applicability of institutional, regional, state, and national regulations related to forgoing LSMT is important to practice ethically within existing legal frameworks. This guidance represents an update of the 1994 statement from the American Academy of Pediatrics on forgoing LSMT.
Identifier
An unambiguous reference to the resource within a given context
<a class="aap-doi-text" href="https://doi.org/10.1542/peds.2017-1905" target="_blank" rel="noreferrer">10.1542/peds.2017-1905</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
Apparent Life Threatening Event/th [therapy]
Article
Awareness
Boss RD
Caregiver
Carter BS
Child Abuse
Child Care
Christian CW
Clinical Decision Making
Comatose Patient
Consensus
Consultation
Critical Illness/th [therapy]
Davies D
Death
Death By Neurologic Criteria
Dell ML
Developmental Disorder/th [therapy]
Diekema DS
Disease Burden
Disease Course
Elster N
Ethical Decision Making
Extremely Low Gestational Age
Family Decision Making
Family Stress
Feudtner C
Flaherty EG
Fortson BL
Foster Care
Gavril AR
Gestational Age
Goal Attainment
Guinn-Jones M
Hauer JM
Health Belief
High Risk Population
Human
Humphrey LM
Hurley TP
Hydration
Idzerda SM
Imaizumi S
Imminent Death
Informed Consent
Intensive Care
Interpersonal Communication
Katz AL
Klick J
Klipstein S
Laskey A
Laventhal N
Legal Aspect
Legano LA
Leventhal JM
Life-sustaining Medical Treatment
Linebarger JS
Lord B
MacAuley RC
MacMillan H
Medical Ethics
Medical Expert
Medical Information
Medical Procedures
Medical Specialist
Medically Administered Nutrition And Hydration
Moon MR
Neglect
Neurologic Disease/di [diagnosis]
November 2017 List
Nutrition
Okun AL
Opel DJ
Oxygenation
Pain/th [therapy]
Palliative Therapy
Parker S
Patient Care Planning
Pediatrician
Pediatrics
Practice Guideline
Priority Journal
Prognosis
Quality Of Life
Resuscitation
Rivera F
shared decision making
Social Support
Spiritual Care
Statter MB
Stedt E
Survival
Teamwork
Terminal Care
Tissue Perfusion
Uncertain Prognosis
Weise KL
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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
n/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
Characteristics of a pediatric hospice palliative care program over 15 years.
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
British Columbia/epidemiology; Child; Child Preschool; Cohort Studies; Demographics; Female; Hospice Care; Hospices/methods/trends; Humans; Life Threatening; Male; Palliative Care; Palliative Care/methods/trends; Patient Care Team/trends; Pediatrics/methods/trends; Retrospective Studies; Survival Rate/trends; Time Factors
Creator
An entity primarily responsible for making the resource
Siden H; Chavoshi N; Harvey B; Parker A; Miller T
Description
An account of the resource
OBJECTIVES: Pediatric palliative care has seen the adoption of several service provision models, yet there is minimal literature describing them. Canuck Place Children's Hospice (CPCH) is North America's first freestanding pediatric hospice. This study describes the characteristics of and services delivered to all children on the CPCH program from 1996 to 2010. METHODS: A retrospective review of all patient medical records CPCH was conducted. Analyses examined trends and correlations between 40 selected data points: linear regression modeling was used to assess trends over time; t tests were used to examine significant associations between independent means; and the Kaplan-Meier method was used to measure survival probabilities. RESULTS: The study cohort included 649 children. The majority of diagnoses belonged to cancers (30%), and diseases of the neuromuscular (20%), and central nervous systems (18%). The majority of deaths occurred among the cancer (45%), central nervous system (15%), and metabolic disease groups (14%). By study end date, 24% of children were still alive, 61% died, and 15% transitioned to adult services (more than half of whom were cognitively competent). On average, 1024 days were spent on the CPCH program (median = 301). The majority of inpatient hospice discharges were for respite (82%); only 7% were for end-of-life care. Location of death was shared between CPCH (61%), hospital (22%), and home (16%). CONCLUSIONS: Diagnostic groups largely determine the nature and magnitude of services used, and our involvement with pediatric life-threatening conditions is increasing. Reviews of pediatric palliative programs can help evaluate the services needed by the population served.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2014-0381" target="_blank" rel="noreferrer">10.1542/peds.2014-0381</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).
2014
British Columbia/epidemiology
Chavoshi N
Child
Child Preschool
Cohort Studies
Demographics
Female
Harvey B
Hospice Care
Hospices/methods/trends
Humans
Life Threatening
Male
Miller T
Palliative Care
Palliative Care/methods/trends
Parker A
Patient Care Team/trends
Pediatrics
Pediatrics/methods/trends
Retrospective Studies
Siden H
Survival Rate/trends
Time Factors
-
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="https://doi.org/10.1542/peds.2017-0690" target="_blank" rel="noreferrer">https://doi.org/10.1542/peds.2017-0690</a>
Notes
Copyright (c) 2017 by the American Academy of Pediatrics.
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
Cross-Cultural Differences in Communication About a Dying Child.
Publisher
An entity responsible for making the resource available
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
Communication; Cross-cultural Comparison; Physician-patient Relations; Attitude To Death/ Ethnology; Child; Humans; Male; Pakistan/ethnology; Subacute Sclerosing Panencephalitis/ Diagnosis/ Ethnology; United States/ethnology
Creator
An entity primarily responsible for making the resource
Cochran D; Saleem S; Khowaja-Punjwani S; Lantos JD
Description
An account of the resource
There are more migrants, refugees, and immigrants adrift in the world today than at any time in the recent past. Doctors and hospitals must care for people from many different cultures, countries, and religious backgrounds. We sometimes find our own deeply held beliefs and values challenged. In this "Ethics Rounds," we present a case in which a Pakistani immigrant family faces a tragic medical situation and wants to deal with it in ways that might be normative in their own culture but are aberrant in ours. We asked the American doctors and 2 Pakistani health professionals to think through the issues. We also invited the father to talk about his own experience and preferences. We conclude that strict adherence to Western ethical norms may not always be the best choice. Instead, an approach based on cultural humility may often allow people on both sides of a cultural divide to learn from one another.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1542/peds.2017-0690" target="_blank" rel="noreferrer">10.1542/peds.2017-0690</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
Attitude To Death/ Ethnology
Child
Cochran D
Communication
Cross-cultural Comparison
December 2017 List
Humans
Khowaja-Punjwani S
Lantos JD
Male
Pakistan/ethnology
Pediatrics
Physician-patient Relations
Saleem S
Subacute Sclerosing Panencephalitis/ Diagnosis/ Ethnology
United States/ethnology
-
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/10.1542/peds.2017-0671" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2017-0671</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
Disparities in the intensity of end-of-life care for children with cancer
Publisher
An entity responsible for making the resource available
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
Childhood Cancer; Health Care Disparity; Terminal Care; Adolescent; Adult; Article; Cancer Chemotherapy; Caucasian; Child; Childhood Mortality; Cohort Analysis; Controlled Study; Demography; Female; Hematologic Malignancy; Hemodialysis; Hospital Admission; Hospital Mortality; Human; Infant; Intensive Care Unit; Intubation; Major Clinical Study; Male; Newborn; Population Research; Priority Journal; Resuscitation; Retrospective Study
Creator
An entity primarily responsible for making the resource
Johnston EE; Alvarez E; Saynina O; Sanders L; Bhatia S; Chamberlain LJ
Description
An account of the resource
BACKGROUND: Many adult patients with cancer who know they are dying choose less intense care; additionally, high-intensity care is associated with worse caregiver outcomes. Little is known about intensity of end-of-life care in children with cancer. METHODS: By using the California Office of Statewide Health Planning and Development administrative database, we performed a population-based analysis of patients with cancer aged 0 to 21 who died between 2000 and 2011. Rates of and sociodemographic and clinical factors associated with previously-defined end-of-life intensity indicators were determined. The intensity indicators included an intense medical intervention (cardiopulmonary resuscitation, intubation, ICU admission, or hemodialysis) within 30 days of death, intravenous chemotherapy within 14 days of death, and hospital death. RESULTS: The 3732 patients were 34% non-Hispanic white, and 41% had hematologic malignancies. The most prevalent intensity indicators were hospital death (63%) and ICU admission (20%). Sixty-five percent had >=1 intensity indicator, 23% >=2, and 22% >=1 intense medical intervention. There was a bimodal association between age and intensity: Ages <5 years and 15 to 21 years was associated with intense care. Patients with hematologic malignancies were more likely to have high-intensity end-of-life care, as were patients from underrepresented minorities, those who lived closer to the hospital, those who received care at a nonspecialty center (neither Children's Oncology Group nor National Cancer Institute Designated Cancer Center), and those receiving care after 2008. CONCLUSIONS: Nearly two-thirds of children who died of cancer experienced intense end-of-life care. Further research needs to determine if these rates and disparities are consistent with patient and/or family goals.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2017-0671" target="_blank" rel="noreferrer">10.1542/peds.2017-0671</a>10.1542/peds.2017-0671
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
Adolescent
Adult
Alvarez E
Article
Bhatia S
Cancer Chemotherapy
Caucasian
Chamberlain LJ
Child
Childhood Cancer
Childhood Mortality
Cohort Analysis
Controlled Study
Demography
Female
Health Care Disparity
Hematologic Malignancy
Hemodialysis
Hospital Admission
Hospital Mortality
Human
Infant
Intensive Care Unit
Intubation
Johnston EE
Major Clinical Study
Male
Newborn
Oncology 2017 List
Pediatrics
Population Research
Priority Journal
Resuscitation
Retrospective Study
Sanders L
Saynina O
Terminal Care
-
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/10.1542/peds.2017-0487" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2017-0487</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
Palliative Sedation With Propofol for an Adolescent With a DNR Order
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Creator
An entity primarily responsible for making the resource
Johnson Liza-Marie; Frader J; Wolfe J; Baker JN; Anghelescu Doralina L; Lantos JD
Description
An account of the resource
Death from cancer is often painful. Usually, the pain can be relieved in ways that allow patients to remain awake and alert until the end. Sometimes, however, the only way to relieve pain is to sedate patients until they are unconscious. This method has been called palliative sedation therapy. Palliative sedation therapy is controversial because it can be misunderstood as euthanasia. We present a case in which an adolescent who is dying of leukemia has intractable pain. Experts in oncology, ethics, pain management, and palliative care discuss the trade-offs associated with different treatment strategies.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2017-0487" target="_blank" rel="noreferrer">10.1542/peds.2017-0487</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).
2017
Anghelescu Doralina L
Baker JN
Frader J
Johnson Liza-Marie
Lantos JD
Oncology 2017 List
Pediatrics
Wolfe J
-
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
n/a
URL Address
<a href="http://doi.org/10.1542/peds.2015-0117" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2015-0117</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
Reducing Perinatal Mortality in Nepal Using Helping Babies Breathe
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Quality Improvement; Female; Guideline Adherence; Humans; Infant; Nepal/epidemiology; Newborn; Perinatal Death/prevention & Control; Perinatal Mortality/trends; Pregnancy; Resuscitation/education/standards/utilization; Stillbirth/epidemiology
Creator
An entity primarily responsible for making the resource
Kc A; Wrammert J; Clark RB; Ewald U; Vitrakoti R; Chaudhary P; Pun A; Raaijmakers H; Malqvist M
Description
An account of the resource
BACKGROUND AND OBJECTIVE: Newborns are at the highest risk of dying around the time of birth, due to intrapartum-related complications. Our study's objective was to improve adherence to the Helping Babies Breathe (HBB) neonatal resuscitation protocol and reduce perinatal mortality by using a quality improvement cycle (QIC) in a tertiary hospital in Nepal. METHODS: The HBB QIC was implemented through a multifaceted approach, including the formation of quality improvement teams; development of quality improvement goals, objectives, and standards; HBB protocol training; weekly review meetings; daily skill checks; use of self-evaluation checklists; and refresher training. A cohort design, including a nested case-control study was used to measure changes in clinical outcomes and adherence to the resuscitation protocol through video recording, before and after implementation of the QIC. RESULTS: The intrapartum stillbirth rate decreased from 9.0 to 3.2 per thousand deliveries, and first-day mortality from 5.2 to 1.9 per thousand live births after intervention, demonstrating a reduction of approximately half in the odds of intrapartum stillbirth (adjusted odds ratio [OR] 0.46, 95% confidence interval [CI] 0.32-0.66) and first-day mortality (adjusted OR 0.51, 95% CI 0.31-0.83). After intervention, the odds of inappropriate use of suction and stimulation decreased by 87% (OR 0.13, 95% CI 0.09-0.17) and 62% (OR 0.38, 95% CI 0.29-0.49), respectively. Before intervention, none of the infants received bag-and-mask ventilation within 1 minute of birth, compared with 83.9% of infants after. CONCLUSIONS: The HBB QIC reduced intrapartum stillbirth and first-day neonatal mortality and led to use of suctioning and stimulation more frequently. The HBB QIC requires further testing in primary settings across Nepal.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2015-0117" target="_blank" rel="noreferrer">10.1542/peds.2015-0117</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).
2016
Chaudhary P
Clark RB
Ewald U
Female
Guideline Adherence
Humans
Infant
Kc A
Malqvist M
Nepal/epidemiology
Newborn
Pediatrics
Perinatal Death/prevention & Control
Perinatal Mortality/trends
Pregnancy
Pun A
Quality Improvement
Raaijmakers H
Resuscitation/education/standards/utilization
Stillbirth/epidemiology
Vitrakoti R
Wrammert J
-
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/10.1542/peds.2012-2772" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2012-2772</a>
<a href="http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=medl&AN=23184104" target="_blank" rel="noreferrer">http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=medl&AN=23184104</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
Supporting the family after the death of a child.
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
adolescent; Child; Humans; infant; Pediatrics; Parents; mortality; Chronic disease; Siblings; Professional-Family Relations; disabled children; Death; social support; Guidelines as Topic; Physician's Role; Counseling; Suicide; Preschool; Premature; AIM; IM; Grief; sibling bereavement; Sudden; Sudden Infant Death; parenting; Substance-Related Disorders; Guilt
Creator
An entity primarily responsible for making the resource
Wender E; HEALTH COMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY
Description
An account of the resource
The death of a child can have a devastating effect on the family. The pediatrician has an important role to play in supporting the parents and any siblings still in his or her practice after such a death. Pediatricians may be poorly prepared to provide this support. Also, because of the pain of confronting the grief of family members, they may be reluctant to become involved. This statement gives guidelines to help the pediatrician provide such support. It describes the grief reactions that can be expected in family members after the death of a child. Ways of supporting family members are suggested, and other helpful resources in the community are described. The goal of this guidance is to prevent outcomes that may impair the health and development of affected parents and children.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2012-2772" target="_blank" rel="noreferrer">10.1542/peds.2012-2772</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).
Type
The nature or genre of the resource
Journal Article
2012
Adolescent
AIM
Backlog
Child
Chronic Disease
Counseling
Death
Disabled Children
Grief
Guidelines As Topic
Guilt
HEALTH COMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY
Humans
IM
Infant
Journal Article
Mortality
Parenting
Parents
Pediatrics
Physician's Role
Premature
Preschool
Professional-family Relations
sibling bereavement
Siblings
Social Support
Substance-Related Disorders
Sudden
Sudden Infant Death
Suicide
Wender E
-
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/10.1542/peds.2012-0663" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2012-0663</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
Allowing Adolescents and Young Adults to Plan Their End-of-Life Care
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Creator
An entity primarily responsible for making the resource
Wiener L; Zadeh S; Battles H; Baird K; Ballard E; Osherow J; Pao M
Description
An account of the resource
OBJECTIVE:The objective of this study was to assess and compare the usefulness, helpfulness, and stress associated with reviewing a previously adapted advance care planning guide, My Thoughts, My Wishes, My Voice, in comparison with the widely used adult document Five Wishes by adolescents and young adults (AYAs) living with a serious illness.METHODS:Fifty-two participants (age 16-28) living with metastatic or recurrent cancer or HIV infection (acquired at birth or early in life) were presented pages randomly from My Thoughts, My Wishes, My Voice and, Five Wishes, and asked to rank 25 items on several factors, including how likely they would be to complete each statement. Participant opinion on suggested changes in content, design, format, and style was obtained and resulted in development of a new document.RESULTS:AYAs living with a life-threatening illness want to be able to choose and record (1) the kind of medical treatment they want and do not want, (2) how they would liked to be cared for, (3) information for their family and friends to know, and (4) how they would like to be remembered.CONCLUSIONS:AYA views of what should be included in an advance care planning guide were incorporated into a new document, Voicing My Choices, that provides youth, families and providers an opportunity to reduce the silence around the dying process by allowing an opportunity to share one's voice. We provide guidance on how to incorporate this tool into care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2012-0663" target="_blank" rel="noreferrer">10.1542/peds.2012-0663</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
Backlog
Baird K
Ballard E
Battles H
Journal Article
Osherow J
Pao M
Pediatrics
Wiener L
Zadeh 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
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.2012-0175" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2012-0175</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
Patterns and costs of health care use of children with medical complexity
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
Children; Cohen 2006 BMC HSR Refs; complex chronic conditions; health care utilization; technology assistance
Creator
An entity primarily responsible for making the resource
Cohen E; Berry JG; Camacho X; Anderson G; Wodchis W; Guttmann A
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2012-0175" target="_blank" rel="noreferrer">10.1542/peds.2012-0175</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
Anderson G
Backlog
Berry JG
Camacho X
Children
Cohen 2006 BMC HSR Refs
Cohen E
Complex Chronic Conditions
Guttmann A
Health Care Utilization
Journal Article
Pediatrics
technology assistance
Wodchis W
-
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/10.1542/peds.2012-0068" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2012-0068</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
Views of adolescents and parents on pediatric research without the potential for clinical benefit
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
Female; Humans; Male; Adolescent Psychology; Adult; Attitude to Health; Questionnaires; Motivation; Altruism; adolescent; Risk-Taking; Parents/psychology; Nontherapeutic Human Experimentation; Research Subjects/psychology; Benefits of PPC
Creator
An entity primarily responsible for making the resource
Wendler D; Abdoler E; Wiener L; Grady C
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2012-0068" target="_blank" rel="noreferrer">10.1542/peds.2012-0068</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
Abdoler E
Adolescent
Adolescent Psychology
Adult
Altruism
Attitude To Health
Backlog
Benefits of PPC
Female
Grady C
Humans
Journal Article
Male
Motivation
Nontherapeutic Human Experimentation
Parents/psychology
Pediatrics
Questionnaires
Research Subjects/psychology
Risk-Taking
Wendler D
Wiener L
-
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/10.1542/peds.2011-2846" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2011-2846</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
Rising national prevalence of life-limiting conditions in children in England.
Publisher
An entity responsible for making the resource available
Pediatrics
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; Female; Humans; infant; Male; Young Adult; Palliative Care; Adult; Prevalence; adolescent; Preschool; infant; Newborn; retrospective studies; England/epidemiology; Critical Illness/epidemiology; Terminally Ill/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Fraser LK; Miller M; Hain R; Norman P; Aldridge J; McKinney PA; Parslow RC
Description
An account of the resource
BACKGROUND: Life-limiting conditions (LLCs) describe diseases with no reasonable hope of cure that will ultimately be fatal. For children with these diseases, palliative care services should be available but few data are available to estimate the burden of these conditions. METHODS: Children (0-19 years) with LLCs were identified within an English Hospital Episode Statistics dataset (2000/2001-2009/2010) by applying a customized coding framework of the International Classification of Diseases, 10th Revision, disease codes. Prevalence per 10 000 population (0-19 years) was calculated by age, diagnostic group, ethnicity, deprivation, and region for each year. RESULTS: The Hospital Episode Statistics extract contained 175 286 individuals with 1 or more LLCs of which congenital anomalies were the most common (31%). Prevalence increased over 10 years from 25 to 32 per 10 000 population. Prevalence in the South Asian (48 per 10 000); black (42 per 10 000); and Chinese, mixed, and "other" (31 per 10 000) populations were statistically significantly higher compared with the white population (27 per 10 000). Prevalence shows an inverse J-shaped relationship with 5 categories of deprivation, with the highest prevalence in the most deprived areas and the lowest in the second least deprived. CONCLUSIONS: In 2010, the prevalence of LLCs in children in England was double the previously reported estimates and had increased annually in all areas over the past decade. This clearly identifies an escalating need for specialist pediatric palliative care services. When planning services for these increasing needs, the excess prevalence in ethnic minority groups, especially in deprived areas, needs to be considered.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2011-2846" target="_blank" rel="noreferrer">10.1542/peds.2011-2846</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
Adolescent
Adult
Aldridge J
Backlog
Child
Critical Illness/epidemiology
England/epidemiology
Female
Fraser LK
Hain R
Humans
Infant
Journal Article
Male
McKinney PA
Miller M
Newborn
Norman P
Palliative Care
Parslow RC
Pediatrics
Preschool
Prevalence
Retrospective Studies
Terminally Ill/statistics & numerical data
Young Adult
-
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/10.1542/peds.2011-2695" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2011-2695</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
Barriers to conducting advance care discussions for children with life-threatening conditions.
Publisher
An entity responsible for making the resource available
Pediatrics
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; Female; Humans; Male; United States; Adult; Medical Staff; Questionnaires; Hospitals; Practice; Pediatric; Attitudes; DNAR; DNAR Outcomes; Palliative Care/st [Standards]; Advance Care Planning/og [Organization & Administration]; Critical Illness/th [Therapy]; Attitude of Health Personnel; Communication Barriers; Health Knowledge; Medical Staff; Hospital/es [Ethics]; Hospital/px [Psychology]; Hospital/st [Standards]
Creator
An entity primarily responsible for making the resource
Durall A; Zurakowski D; Wolfe J
Description
An account of the resource
BACKGROUND AND OBJECTIVE: Advance care discussions (ACD) occur infrequently or are initiated late in the course of illness. Although data exist regarding barriers to ACD among the care of adult patients, few pediatric data exist. The goal of this study was to identify barriers to conducting ACD for children with life-threatening conditions., METHODS: Physicians and nurses from practice settings where advance care planning typically takes place were surveyed to collect data regarding their attitudes and behaviors regarding ACD., RESULTS: A total of 266 providers responded to the survey: 107 physicians and 159 nurses (54% response rate). The top 3 barriers were: unrealistic parent expectations, differences between clinician and patient/parent understanding of prognosis, and lack of parent readiness to have the discussion. Nurses identified lack of importance to clinicians (P = .006) and ethical considerations (P < .001) as impediments more often than physicians. Conversely, physicians believed that not knowing the right thing to say (P = .006) was more often a barrier. There are also perceived differences among specialties. Cardiac ICU providers were more likely to report unrealistic clinician expectations (P < .001) and differences between clinician and patient/parent understanding of prognosis (P = .014) as common barriers to conducting ACD. Finally, 71% of all clinicians believed that ACD happen too late in the patient's clinical course., CONCLUSIONS: Clinicians perceive parent prognostic understanding and attitudes as the most common barriers to conducting ACD. Educational interventions aimed at improving clinician knowledge, attitudes, and skills in addressing these barriers may help health care providers overcome perceived barriers.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2011-2695" target="_blank" rel="noreferrer">10.1542/peds.2011-2695</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
Adult
Advance Care Planning/og [Organization & Administration]
Attitude Of Health Personnel
Attitudes
Backlog
Child
Communication Barriers
Critical Illness/th [therapy]
DNAR
DNAR Outcomes
Durall A
Female
Health Knowledge
Hospital/es [Ethics]
Hospital/px [Psychology]
Hospital/st [Standards]
Hospitals
Humans
Journal Article
Male
Medical Staff
Palliative Care/st [standards]
Pediatric
Pediatrics
Practice
Questionnaires
United States
Wolfe J
Zurakowski 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/10.1542/peds.2011-0272" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2011-0272</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
Parent Involvement in Pain Management for NICU Infants: A Randomized Controlled Trial
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Creator
An entity primarily responsible for making the resource
Franck LS; Oulton K; Nderitu S; Lim M; Fang S; Kaiser A
Description
An account of the resource
Objectives: To demonstrate feasibility and estimate the effect of an intervention to increase parental involvement in infant pain management in the NICU on parents' stress and postdischarge parenting competence and confidence. Methods: The study involved a randomized controlled trial. Parents recruited from 4 NICUs were randomly assigned by site to receive (1) a pain information booklet and instruction on infant comforting techniques (n = 84 intervention) in addition to a generic NICU care booklet or (2) the generic NICU care booklet alone (n = 85 control). The primary outcome was postintervention Parent Stressor Scale: NICU (PSS:NICU) scores. Secondary outcomes included parent attitudes about infant pain, nursing pain assessment, and parenting competence and role attainment after discharge. Results: No differences were found between groups in PSS:NICU scores. Significant differences favoring the intervention group were found for satisfaction with pain information, parents shown infant pain cues and comforting techniques, nursing pain assessment, and parent preference for involvement during painful procedures. Role attainment after discharge was higher for the intervention group than for the control group. Both the intervention and control groups highly valued attention to infant pain and wanted information and involvement. Conclusions: These results provide no evidence of a reduction in NICU-related stress for parents who receive an intervention to increase their understanding and involvement in infant pain management. However, parents in the intervention group were better prepared to take an active role in infant pain care and had more positive views about their role attainment in the postdischarge period.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2011-0272" target="_blank" rel="noreferrer">10.1542/peds.2011-0272</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
2011
Backlog
Fang S
Franck LS
Journal Article
Kaiser A
Lim M
Nderitu S
Oulton K
Pediatrics
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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/10.1542/peds.2010-3225" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2010-3225</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 care patients: a prospective multicenter cohort study
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
adolescent; Child; Female; Hospitalization; Humans; infant; Male; United States; Young Adult; Palliative Care; Prevalence; Chronic disease; Eligibility Determination; Follow-Up Studies; Medical Audit; Prospective Studies; adolescent; Preschool; Palliative Care/organization & administration; infant; Newborn; PEDI Study; United States/epidemiology; Chronic Disease/epidemiology/therapy; Eligibility Determination/methods; Hospitalization/trends; Medical Audit/organization & administration
Creator
An entity primarily responsible for making the resource
Feudtner C; Kang T; Hexem KR; Friedrichsdorf SJ; Osenga K; Siden H; Friebert SE; Hays Ross M; Dussel V; Wolfe J
Description
An account of the resource
OBJECTIVE: To describe demographic and clinical characteristics and outcomes of patients who received hospital-based pediatric palliative care (PPC) consultations. DESIGN, SETTING, AND PATIENTS: Prospective observational cohort study of all patients served by 6 hospital-based PPC teams in the United States and Canada from January to March 2008. RESULTS: There were 515 new (35.7%) or established (64.3%) patients who received care from the 6 programs during the 3-month enrollment interval. Of these, 54.0% were male, and 69.5% were identified as white and 8.1% as Hispanic. Patient age ranged from less than one month (4.7%) to 19 years or older (15.5%). Of the patients, 60.4% lived with both parents, and 72.6% had siblings. The predominant primary clinical conditions were genetic/congenital (40.8%), neuromuscular (39.2%), cancer (19.8%), respiratory (12.8%), and gastrointestinal (10.7%). Most patients had chronic use of some form of medical technology, with gastrostomy tubes (48.5%) being the most common. At the time of consultation, 47.2% of the patients had cognitive impairment; 30.9% of the cohort experienced pain. Patients were receiving many medications (mean: 9.1). During the 12-month follow-up, 30.3% of the cohort died; the median time from consult to death was 107 days. Patients who died within 30 days of cohort entry were more likely to be infants and have cancer or cardiovascular conditions. CONCLUSIONS: PPC teams currently serve a diverse cohort of children and young adults with life-threatening conditions. In contrast to the reported experience of adult-oriented palliative care teams, most PPC patients are alive for more than a year after initiating PPC.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2010-3225" target="_blank" rel="noreferrer">10.1542/peds.2010-3225</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
2011
Adolescent
Backlog
Child
Chronic Disease
Chronic Disease/epidemiology/therapy
Dussel V
Eligibility Determination
Eligibility Determination/methods
Female
Feudtner C
Follow-up Studies
Friebert SE
Friedrichsdorf SJ
Hays Ross M
Hexem KR
Hospitalization
Hospitalization/trends
Humans
Infant
Journal Article
Kang T
Male
Medical Audit
Medical Audit/organization & administration
Newborn
Osenga K
Palliative Care
Palliative Care/organization & Administration
PEDI Study
Pediatrics
Preschool
Prevalence
Prospective Studies
Siden H
United States
United States/epidemiology
Wolfe J
Young Adult
-
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/10.1542/peds.2010-3175" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2010-3175</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
Annual summary of vital statistics: 2008
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Child; Female; Humans; infant; Male; United States; Young Adult; Adult; adolescent; Preschool; infant; Newborn; Maternal Age; Age Distribution; Infant Mortality/trends; Mortality/trends; Birth Rate/trends; Vital Statistics
Creator
An entity primarily responsible for making the resource
Mathews TJ; Minino AM; Osterman MJ; Strobino DM; Guyer B
Description
An account of the resource
The number of births in the United States decreased between 2007 and 2008 (preliminary estimate: 4 251 095). Birth rates declined among all women aged 15 to 39 years; the decrease among teenagers reverses the increases seen in the previous 2 years. The total fertility rate decreased 2% in 2008 to 2085.5 births per 1000 women. The proportion of all births to unmarried women increased to 40.6% in 2008, up from 39.7% in 2007. The 2008 preterm birth rate was 12.3%, a decline of 3% from 2007. In 2008, 32.3% of all births occurred by cesarean delivery, up nearly 2% from 2007. Twin and triplet birth rates were unchanged. The infant mortality rate was 6.59 infant deaths per 1000 live births in 2008 (significantly lower than the rate of 6.75 in 2007). Life expectancy at birth was 77.8 years in 2008. Crude death rates for children aged 1 to 19 years decreased by 5.5% between 2007 and 2008. Unintentional injuries and homicide were, respectively, the first and second leading causes of death in this age group. These 2 causes of death jointly accounted for 51.2% of all deaths of children and adolescents in 2008. This annual article is a long-standing feature in Pediatrics and provides a summary of the most current vital statistics data for the United States. We also include a special feature this year on the differences in cesarean-delivery rates according to race and Hispanic origin.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2010-3175" target="_blank" rel="noreferrer">10.1542/peds.2010-3175</a>
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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
2011
Adolescent
Adult
Age Distribution
Backlog
Birth Rate/trends
Child
Female
Guyer B
Humans
Infant
Infant Mortality/trends
Journal Article
Male
Maternal Age
Mathews TJ
Minino AM
Mortality/trends
Newborn
Osterman MJ
Pediatrics
Preschool
Strobino DM
United States
Vital Statistics
Young Adult
-
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/10.1542/peds.2010-0910" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2010-0910</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
Children with medical complexity: An emerging population for clinical and research initiatives
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Cohen 2006 BMC HSR Refs
Creator
An entity primarily responsible for making the resource
Cohen E; Kuo D; Agrawal R; Berry J; Simon T; Bhagat S; Srivastava R
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2010-0910" target="_blank" rel="noreferrer">10.1542/peds.2010-0910</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
2011
Agrawal R
Backlog
Berry J
Bhagat S
Cohen 2006 BMC HSR Refs
Cohen E
Journal Article
Kuo D
Pediatrics
Simon T
Srivastava R
-
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/10.1542/peds.2010-0072" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2010-0072</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
Approaches to the difficult patient/parent encounter
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Child; Female; Humans; Male; Physician-Patient Relations; Pediatrics; Parents; Conflict (Psychology); adolescent; Patients/classification
Creator
An entity primarily responsible for making the resource
Breuner CC; Moreno MA
Description
An account of the resource
Most pediatricians have experienced uneasy interactions involving patients and/or their parents. The majority of literature on this topic reflects encounters in adult medicine, without providing much information for pediatricians who also face this challenge. Unique to the pediatric approach is the added quotient of the parent/family dynamic. Patients or their parents may have personality disorders or subclinical mental health issues, physicians may be overworked or have a lack of experience, and the health care system may be overburdened, fragmented, and inundated with poor communication. Recognizing the physical or emotional responses triggered by challenging patients/families may allow the provider to effectively partner with, instead of confront, the patient or the family. In this article we review existing literature on this subject and describe possible strategies for the pediatrician to use during a difficult encounter.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2010-0072" target="_blank" rel="noreferrer">10.1542/peds.2010-0072</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
2011
Adolescent
Backlog
Breuner CC
Child
Conflict (Psychology)
Female
Humans
Journal Article
Male
Moreno MA
Parents
Patients/classification
Pediatrics
Physician-patient Relations
-
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/10.1542/peds.108.3.653" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.108.3.653</a>
<a href="http://pediatrics.aappublications.org/content/108/3/653" target="_blank" rel="noreferrer">http://pediatrics.aappublications.org/content/108/3/653</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 Care for Neonates and Infants: The Experience and Effects of a Palliative Care Consultation Service
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Palliative Care; infant; Infants; Terminal Illness; end-of-life care; Death and Dying
Creator
An entity primarily responsible for making the resource
Pierucci R; Kirby RS; Leuthner SR
Description
An account of the resource
Objective. Neonates and infants have the highest death rate in the pediatric population, yet there is a paucity of data about their end-of-life care and whether a palliative care service can have an impact on that care. The objective of this study was to describe end-of-life care for infants, including analysis of palliative care consultations conducted in this population. We hypothesized that the palliative care consultations performed had an impact on the infants' end-of-life care. Design. A retrospective chart review using the “End of Life Chart Review” from the Center to Improve Care for the Dying was conducted. The participants were the patients at Children's Hospital of Wisconsin who died at <1 year of age during the 4-year period between January 1, 1994, and December 31, 1997. The patients' place of death, medical interventions performed, and emotionally supportive services provided to families were analyzed. Results. Among the 196 deaths during the study period, 25 (13%) of these infants and families had palliative care consultations. The rate of consultations increased from 5% of the infant deaths in 1994 to 38% of the infant deaths in 1997. Infants of families that received consultations had fewer days in intensive care units, blood draws, central lines, feeding tubes, vasopressor and paralytic drug use, mechanical ventilation, cardiopulmonary resuscitation, and x-rays, and the families had more frequent referrals for chaplains and social services than families that did not have palliative care consultations. Conclusions. This study describes the end-of-life care that infants and their families received. Fewer medical procedures were performed, and more supportive services were provided to infants and families that had a palliative care consultation. This suggests that palliative care consultation may enhance end-of-life care for newborns.
2001-09
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.108.3.653" target="_blank" rel="noreferrer">10.1542/peds.108.3.653</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
2001
Backlog
Death and Dying
End-of-life Care
Infant
Infants
Journal Article
Kirby RS
Leuthner SR
Palliative Care
Pediatrics
Pierucci R
Terminal Illness
-
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://pediatrics.aappublications.org/content/106/Supplement_1/205" target="_blank" rel="noreferrer">http://pediatrics.aappublications.org/content/106/Supplement_1/205</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 Deaths Attributable to Complex Chronic Conditions: A Population-Based Study of Washington State, 1980–1997
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
complex chronic conditions; Mortality/trends; pediatric deaths; population-based study
Creator
An entity primarily responsible for making the resource
Feudtner C; Christakis DA; Connell FA
Description
An account of the resource
Objectives. Advances in medical technology and public health are changing the causes and patterns of pediatric mortality. To better inform health care planning for dying children, we sought to determine if an increasing proportion of pediatric deaths were attributable to an underlying complex chronic condition (CCC), what the typical age of CCC-associated deaths was, and whether this age was increasing. Design. Population-based retrospective cohort from 1980 to 1997, compiled from Washington State annual censuses and death certificates of children 0 to 18 years old. Main Outcome Measures. For each of 9 categories of CCCs, the counts of death, mortality rates, and ages of death. Results. Nearly one-quarter of the 21 617 child deaths during this period were attributable to a CCC. Death rates for the sudden infant death syndrome (SIDS), CCCs, and all other causes each declined, but less so for CCCs. Among infants who died because of causes other than injury or SIDS, 31% of the remaining deaths were attributable to a CCC in 1980 and 41% by 1997; for deaths in children 1 year of age and older, CCCs were cited in 53% in 1980, versus 58% in 1997. The median age of death for all CCCs was 4 months 9 days, with substantial differences among CCCs. No overall change in the age of death between 1980 to 1997 was found (nonparametric trend test). Conclusions. CCCs account for an increasing proportion of child deaths. The majority of these deaths occur during infancy, but the typical age varies by cause. These findings should help shape the design of support care services offered to children dying with chronic conditions and their families.
2000-07
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).
Type
The nature or genre of the resource
Journal Article
2000
Backlog
Christakis DA
Complex Chronic Conditions
Connell FA
Feudtner C
Journal Article
Mortality/trends
pediatric deaths
Pediatrics
population-based study
-
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/10.1542/peds.99.5.711" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.99.5.711</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
Pain management in the emergency department: patterns of analgesic utilization
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
1997
Subject
The topic of the resource
Child; Female; Humans; Male; Patient Discharge; Adult; Age Factors; Hospitals; Emergency Service; Comparative Study; Pain/drug therapy; Analgesics/administration & dosage/therapeutic use; Hospital/statistics & numerical data; Academic Medical Centers/statistics & numerical data; Community/statistics & numerical data; Drug Utilization/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Petrack EM; Christopher NC; Kriwinsky J
Description
An account of the resource
OBJECTIVE: To compare the use of analgesia in children to adults in 3 different emergency department (ED) settings. METHODS: Forty adult and 40 pediatric ED charts were randomly selected for review at each of 3 institutions: an academic medical center with separate pediatric and adult EDs (SEP ED), a community academic medical center with a combined adult and pediatric ED (COMB ED), and a community hospital with a combined ED (COMTY ED). All patients presenting to the EDs from July 1993 to June 1994 within 12 hours of an isolated long bone fracture were eligible for inclusion. Data were collected on demographics, training of providers, analgesic use and dosing in the ED and on discharge, and time from triage to analgesic use. RESULTS: The mean pediatric and adult ages were 8.7 and 38.3 years, respectively. Overall, 152/240 (63%) patients received some form of analgesia in the ED, with the COMTY ED (41/80; 51%) offering significantly less analgesia than the COMB ED (58/80; 73%), but not the SEP ED (53/80; 66%). Pediatric patients (64/120; 53%) received significantly less analgesia in the ED than adult patients (88/120; 73%). This difference was significant at the COMB ED (pediatric 23/40; 58% vs adult 35/40; 88%) and COMTY ED (pediatric 15/40; 38% vs adult 26/40; 65%), but not at the SEP ED (pediatric 26/40; 65% vs adult 27/40; 68%). 195/240 (81%) patients received discharge pain medication. There were no differences between pediatric (93/120; 78%) and adult (102/120; 85%) discharge analgesic prescribing practices. Although there was no difference in appropriateness of analgesic doses in the ED, pediatric patients (20/74; 27%) were more likely than adult patients (3/88; 3%) to receive inadequate doses of analgesics on discharge from the ED. CONCLUSIONS: ED analgesia continues to be used less frequently in the pediatric compared with the adult population. Inadequate dosing of discharge analgesic medication in children is a significant problem. Patterns of analgesic utilization may differ in different types of ED settings.
1997
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.99.5.711" target="_blank" rel="noreferrer">10.1542/peds.99.5.711</a>
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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
1997
Academic Medical Centers/statistics & numerical data
Adult
Age Factors
Analgesics/administration & dosage/therapeutic use
Backlog
Child
Christopher NC
Community/statistics & numerical data
Comparative Study
Drug Utilization/statistics & numerical data
Emergency Service
Female
Hospital/statistics & numerical data
Hospitals
Humans
Journal Article
Kriwinsky J
Male
Pain/drug Therapy
Patient Discharge
Pediatrics
Petrack EM
-
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/10.1542/peds.108.4.965" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.108.4.965</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
Issues in Islamic biomedical ethics: a primer for the pediatrician
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Child; Female; Humans; Male; Adult; Attitude to Death; Religion and Medicine; Cultural Characteristics; Bioethics; adolescent; Professional Patient Relationship; United States/epidemiology; Jurisprudence; Parenting/psychology; Bioethics and Professional Ethics; Child Development/classification; Child Rearing; Human Rights/standards; Islam/psychology; Religious Approach
Creator
An entity primarily responsible for making the resource
Hedayat KM; Pirzadeh R
Description
An account of the resource
The United States is becoming increasingly pluralistic. Pediatricians must become familiar with the factors that affect the emotional, physical, and spiritual health of their patients that are outside the kin of the traditionally dominant value system. Although many articles have addressed the cultural and ethnic factors, very few have considered the impact of religion. Islam, as the largest and fastest-growing religion in the world, has adherent throughout the world, including the United States, with 50% of US Muslims being indigenous converts. Islam presents a complete moral, ethical, and medical framework that, while it sometimes concurs, at times diverges or even conflicts with the US secular ethical framework. This article introduces the pediatrician to the Islamic principles of ethics within the field of pediatric care and child-rearing. It demonstrates how these principles may impact outpatient and inpatient care. Special attention is also given to adolescent and end-of-life issues.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.108.4.965" target="_blank" rel="noreferrer">10.1542/peds.108.4.965</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
2001
Adolescent
Adult
Attitude To Death
Backlog
Bioethics
Bioethics and Professional Ethics
Child
Child Development/classification
Child Rearing
Cultural Characteristics
Female
Hedayat KM
Human Rights/standards
Humans
Islam/psychology
Journal Article
Jurisprudence
Male
Parenting/psychology
Pediatrics
Pirzadeh R
Professional Patient Relationship
Religion and Medicine
Religious Approach
United States/epidemiology
-
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/10.1542/peds.108.4.1020" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.108.4.1020</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
Acetaminophen toxicity in children
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Child; Humans; Pediatrics; Adult; Analgesics; Age Factors; Acetaminophen/adverse effects/poisoning/therapeutic use; Charcoal/therapeutic use; Ibuprofen/therapeutic use; Non-Narcotic/adverse effects/poisoning/therapeutic use; Overdose/diagnosis/therapy
Creator
An entity primarily responsible for making the resource
American Academy of PediatricsCommittee on Drugs
Description
An account of the resource
Acetaminophen is widely used in children, because its safety and efficacy are well established. Although the risk of developing toxic reactions to acetaminophen appears to be lower in children than in adults, such reactions occur in pediatric patients from intentional overdoses. Less frequently, acetaminophen toxicity is attributable to unintended inappropriate dosing or the failure to recognize children at increased risk in whom standard acetaminophen doses have been administered. Because the symptoms of acetaminophen intoxication are nonspecific, the diagnosis and treatment of acetaminophen intoxication are more likely to be delayed in unintentional cases of toxicity. This statement describes situations and conditions that may contribute to acetaminophen toxicity not associated with suicidal intentions.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.108.4.1020" target="_blank" rel="noreferrer">10.1542/peds.108.4.1020</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
2001
Acetaminophen/adverse effects/poisoning/therapeutic use
Adult
Age Factors
American Academy of PediatricsCommittee on Drugs
Analgesics
Backlog
Charcoal/therapeutic use
Child
Humans
Ibuprofen/therapeutic use
Journal Article
Non-Narcotic/adverse effects/poisoning/therapeutic use
Overdose/diagnosis/therapy
Pediatrics
-
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/10.1542/peds.107.6.e99" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.107.6.e99</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
Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Child; Female; Humans; Male; Adult; adolescent; Pediatrics/statistics & numerical data; ICU Decision Making; cause of death; United States/epidemiology; Mortality/trends; Chronic Disease/epidemiology/mortality
Creator
An entity primarily responsible for making the resource
Feudtner C; Hays RM; Haynes G; et al
Description
An account of the resource
BACKGROUND: Children with complex chronic conditions (CCCs) might benefit from pediatric supportive care services, such as home nursing, palliative care, or hospice, especially those children whose conditions are severe enough to cause death. We do not know, however, the extent of this population or how it is changing over time. OBJECTIVES: To identify trends over the past 2 decades in the pattern of deaths attributable to pediatric CCCs, examining counts and rates of CCC-attributed deaths by cause and age (infancy: <1 year old, childhood: 1-9 years old, adolescence or young adulthood: 10-24 years old) at the time of death, and to determine the average number of children living within the last 6 months of their lives. DESIGN/METHODS: We conducted a retrospective cohort study using national death certificate data and census estimates from the National Center for Health Statistics. Participants included all people 0 to 24 years old in the United States from 1979 to 1997. CCCs comprised a broad array of International Classification of Diseases, Ninth Revision codes for cardiac, malignancy, neuromuscular, respiratory, renal, gastrointestinal, immunodeficiency, metabolic, genetic, and other congenital anomalies. Trends of counts and rates were tested using negative binomial regression. RESULTS: Of the 1.75 million deaths that occurred in 0- to 24-year-olds from 1979 to 1997, 5% were attributed to cancer CCCs, 16% to noncancer CCCs, 43% to injuries, and 37% to all other causes of death. Overall, both counts and rates of CCC-attributed deaths have trended downward, with declines more pronounced and statistically significant for noncancer CCCs among infants and children, and for cancer CCCs among children, adolescents, and young adults. In 1997, deaths attributed to all CCCs accounted for 7242 infant deaths, 2835 childhood deaths, and 5109 adolescent deaths. Again, in 1997, the average numbers of children alive who would die because of a CCC within the ensuing 6-month period were 1097 infants, 1414 children, and 2548 adolescents or young adults. CONCLUSIONS: Population-based planning of pediatric supportive care services should use measures that best inform our need to provide care for time-limited events (perideath or bereavement care) versus care for ongoing needs (home nursing or hospice). Pediatric supportive care services will need to serve patients with a broad range of CCCs from infancy into adulthood.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.107.6.e99" target="_blank" rel="noreferrer">10.1542/peds.107.6.e99</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
2001
Adolescent
Adult
Backlog
Cause Of Death
Child
Chronic Disease/epidemiology/mortality
et al
Female
Feudtner C
Haynes G
Hays RM
Humans
ICU Decision Making
Journal Article
Male
Mortality/trends
Pediatrics
Pediatrics/statistics & numerical data
United States/epidemiology
-
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/10.1542/peds.106.2.351" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.106.2.351</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
Palliative care for children.
Publisher
An entity responsible for making the resource available
Pediatrics
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; United States; Palliative Care; Terminal Care; Pediatrics; Longitudinal Studies; Preschool; Death and Euthanasia; infant; Practice Guidelines
Creator
An entity primarily responsible for making the resource
American Academy of Pediatrics; Committee on Bioethics; American Academy of Pediatrics Committee on Hospital Care
Description
An account of the resource
This statement presents an integrated model for providing palliative care for children living with a life-threatening or terminal condition. Advice on the development of a palliative care plan and on working with parents and children is also provided. Barriers to the provision of effective pediatric palliative care and potential solutions are identified. The American Academy of Pediatrics recommends the development and broad availability of pediatric palliative care services based on child-specific guidelines and standards. Such services will require widely distributed and effective palliative care education of pediatric health care professionals. The Academy offers guidance on responding to requests for hastening death, but does not support the practice of physician-assisted suicide or euthanasia for children.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.106.2.351" target="_blank" rel="noreferrer">10.1542/peds.106.2.351</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
American Academy of Pediatrics
American Academy of Pediatrics Committee on Hospital Care
Backlog
Child
Committee on Bioethics
Death and Euthanasia
Humans
Infant
Journal Article
Longitudinal Studies
Palliative Care
Pediatrics
Practice Guidelines
Preschool
Terminal Care
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/10.1542/peds.106.2.351" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.106.2.351</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
Palliative care for children
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Bereavement Leave Policy Paper
Creator
An entity primarily responsible for making the resource
Nelson RM; Botkin JR; Kodish ED; Levetown M; Truman JT; Wilfond BS; Kazura A; Krug E; Schwartz PA; Caniano DA; Donovan GK; Davis DS; Tellez S; Neff JM; Hardy DR; Jewett PH; Packard JM; Snitzer JA; Steinhart CM; Dull S; O'Connor M; Ostric EJ; Rucki SQ; Weiner E; Wilson JM; Wise R; Klein MD; Striker T; Mucha S; Bioethics Comm; Comm Hosp Care
Description
An account of the resource
This statement presents an integrated model for providing palliative care for children living with a life-threatening or terminal condition. Advice on the development of a palliative care plan and on working with parents and children is also provided. Barriers to the provision of effective pediatric palliative care and potential solutions are identified. The American Academy of Pediatrics recommends the development and broad availability of pediatric palliative care services based on child-specific guidelines and standards. Such services will require widely distributed and effective palliative care education of pediatric health care professionals. The Academy offers guidance on responding to requests for hastening death, but does not support the practice of physician-assisted suicide or euthanasia for children.}
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.106.2.351" target="_blank" rel="noreferrer">10.1542/peds.106.2.351</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
Backlog
Bereavement Leave Policy Paper
Bioethics Comm
Botkin JR
Caniano DA
Comm Hosp Care
Davis DS
Donovan GK
Dull S
Hardy DR
Jewett PH
Journal Article
Kazura A
Klein MD
Kodish ED
Krug E
Levetown M
Mucha S
Neff JM
Nelson RM
O'Connor M
Ostric EJ
Packard JM
Pediatrics
Rucki SQ
Schwartz PA
Snitzer JA
Steinhart CM
Striker T
Tellez S
Truman JT
Weiner E
Wilfond BS
Wilson JM
Wise R
-
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/10.1542/peds.103.4.e46" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.103.4.e46</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
Variability in physician opinion on limiting pediatric life support
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
1999
Subject
The topic of the resource
Child; Cross-Sectional Studies; Female; Humans; Male; Intensive Care Units; Medical Staff; Prognosis; Questionnaires; Euthanasia; Fellowships and Scholarships; Regression Analysis; Pediatric; Empirical Approach; Death and Euthanasia; decision making; Pediatrics/statistics & numerical data; ICU Decision Making; Neoplasms/therapy; Terminal Care/psychology; Passive/psychology; Intensive Care/psychology; Hospital/psychology/statistics & numerical data; Medical Oncology/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Randolph AG; Zollo MB; Egger MJ; Guyatt GH; Nelson RM; Stidham GL
Description
An account of the resource
OBJECTIVE: We conducted this study to investigate how physicians in a pediatric intensive care unit (ICU) currently make decisions to withdraw and withhold life support. Consultation with the patient's primary caregiver often precedes decisions about withdrawal and limitation of life support in chronically ill patients. In these scenarios, the patient's primary caregiver was the pediatric oncologist. To evaluate the influence of subspecialty training, we compared the attitudes of the pediatric intensivists and the oncologists using scenarios describing critically ill oncology patients. DESIGN: Cross-sectional survey. Each physician was randomly assigned 4 of 8 potential case scenarios. SETTING: A total of 29 American pediatric ICUs. PARTICIPANTS: Pediatric intensive care and oncology attendings and fellows. INTERVENTION: Systematic manipulation of patient characteristics in two hypothetical case scenarios describing 6-year-old female oncology patients presenting to the ICU after the institution of mechanical ventilator support for acute respiratory failure. Cases 1 through 4 described a patient who, before admission, had a 99% projected 1-year probability of survival from her underlying cancer and suffered from severe neurologic disabilities. Cases 5 through 8 described a patient who was neurologically normal before admission and had a /=10% of respondents chose full aggressive management as the most appropriate level of care, whereas another >/=10% chose comfort measures only when viewing the same scenario. The most significant respondent factors affecting choices were professional status (attending vs fellow) and the self-rated importance of functional neurologic status. The majority of respondents (83%) believed that the intensive care and the oncology staff were usually in agreement at their institution about the level of intervention to recommend to the parents. (ABSTRACT TRUNCATED)
1999
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.103.4.e46" target="_blank" rel="noreferrer">10.1542/peds.103.4.e46</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
1999
Backlog
Child
Cross-sectional Studies
Death and Euthanasia
Decision Making
Egger MJ
Empirical Approach
Euthanasia
Fellowships And Scholarships
Female
Guyatt GH
Hospital/psychology/statistics & numerical data
Humans
ICU Decision Making
Intensive Care Units
Intensive Care/psychology
Journal Article
Male
Medical Oncology/statistics & numerical data
Medical Staff
Nelson RM
Neoplasms/therapy
Passive/psychology
Pediatric
Pediatrics
Pediatrics/statistics & numerical data
Prognosis
Questionnaires
Randolph AG
Regression Analysis
Stidham GL
Terminal Care/psychology
Zollo MB