1
40
16
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Text
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<a href="http://doi.org/10.1016/j.jpeds.2013.11.070" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpeds.2013.11.070</a>
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Title
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Developmental trajectories of mobility and self-care capabilities in young children with cerebral palsy
Publisher
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The Journal Of 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
Child; Female; Humans; infant; Male; Prospective Studies; Cerebral Palsy; Child Development; Self Care; Preschool; PEDI Study
Creator
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Ketelaar M; Gorter JW; Westers P; Hanna S; Verhoef M
Description
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OBJECTIVE: To describe development of mobility and self-care capabilities in young children (aged 1-4 years) with cerebral palsy, and to examine whether the development of mobility and self-care capabilities differs by cerebral palsy severity in terms of 5 distinct Gross Motor Function Classification System (GMFCS) levels. STUDY DESIGN: This prospective longitudinal cohort study included 100 children with cerebral palsy (aged 1.5 or 2.5 years at baseline) and their parents. Mobility and self-care capabilities were assessed by the Pediatric Evaluation of Disability Inventory during yearly assessments from inclusion up to age 4.5 years. Longitudinal data for 92 children were available for analysis. Repeated-measures analyses with random coefficient analysis were performed using linear mixed models. RESULTS: Despite large variations among individuals in the development of mobility and self-care capabilities in young children with cerebral palsy, distinct developmental trajectories were found for children in different GMFCS levels. The estimated change per month differed significantly by GMFCS level for both outcomes. CONCLUSIONS: This longitudinal study provides an evidence base for prognosis in daily mobility and self-care skills in young children with cerebral palsy. The developmental trajectories for GMFCS levels can be helpful in communication between professionals and also in discussions of expectations and goal setting with families regarding mobility and self-care in the daily life of young children with cerebral palsy in neonatal follow-up and pediatric practice.
2014-04
Identifier
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<a href="http://doi.org/10.1016/j.jpeds.2013.11.070" target="_blank" rel="noreferrer">10.1016/j.jpeds.2013.11.070</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
2014
Backlog
Cerebral Palsy
Child
Child Development
Female
Gorter JW
Hanna S
Humans
Infant
Journal Article
Ketelaar M
Male
PEDI Study
Preschool
Prospective Studies
Self Care
The Journal Of Pediatrics
Verhoef M
Westers P
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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Backlog
URL Address
<a href="http://doi.org/10.1111/dmcn.12226" target="_blank" rel="noreferrer">http://doi.org/10.1111/dmcn.12226</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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A systematic review of activities of daily living measures for children and adolescents with cerebral palsy
Publisher
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Developmental Medicine And Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
adolescent; Child; Female; Humans; Male; Cerebral Palsy; Activities of Daily Living; Reproducibility of Results; Psychometrics; Disability Evaluation; PEDI Study
Creator
An entity primarily responsible for making the resource
James S; Ziviani J; Boyd R
Description
An account of the resource
AIM: This study aimed to systematically review the psychometric properties and clinical utility of measures of activities of daily living (ADL) for children with cerebral palsy (CP) aged 5 to 18 years. METHOD: Five electronic databases were searched to identify available ADL measures with published psychometric data for school-aged children with CP. Measures were included if at least 60% of the items addressed ADL in the full assessment or in an independent domain. A modified CanChild Outcome Rating Form was used to report the validity, reliability, responsiveness, and clinical utility of the measures. RESULTS: Twenty-six measures were identified and eight met inclusion criteria. The Pediatric Evaluation of Disability Inventory (PEDI) had the strongest psychometric properties but was limited by its age range. The Assessment of Motor and Process Skills (AMPS) was the most comprehensive evaluation of underlying motor and cognitive abilities yet further psychometric testing is required for children with CP. INTERPRETATION: The PEDI should be used to measure ADL capability in elementary school aged children. The AMPS is the best measure to evaluate ADL performance or capacity and is suitable for all ages. Future research should examine the reliability of the AMPS to determine its stability in children and adolescents with CP.
2014-03
Identifier
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<a href="http://doi.org/10.1111/dmcn.12226" target="_blank" rel="noreferrer">10.1111/dmcn.12226</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
2014
Activities of Daily Living
Adolescent
Backlog
Boyd R
Cerebral Palsy
Child
Developmental Medicine and Child Neurology
Disability Evaluation
Female
Humans
James S
Journal Article
Male
PEDI Study
Psychometrics
Reproducibility of Results
Ziviani 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/10.3109/01942638.2013.823473" target="_blank" rel="noreferrer">http://doi.org/10.3109/01942638.2013.823473</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Mothers' experiences with the Pediatric Evaluation of Disability Inventory (PEDI)
Publisher
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Physical & Occupational Therapy In 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
PEDI Study
Creator
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Rich D; Rigby P; Wright V
Description
An account of the resource
Parents of a child with a disability are often asked about their child's functioning in daily activities. One way to gather this information is through parent-report functional questionnaires such as the Pediatric Evaluation of Disability Inventory (PEDI). The purpose of this study was to explore parental experiences associated with completion of the PEDI before and after a functional therapy intervention. Semi-structured interviews were conducted with 12 mothers of children with cerebral palsy (CP) or developmental delay (DD) who had completed the PEDI within a larger study. A content analysis approach was used to code and organize the data into five themes. PEDI completion was associated with increased parental awareness of developmental patterns, and greater insight into levels of assistance they give to their child. Parents described various challenges and concerns with the PEDI that have implications for test administration processes. The findings have potential to enable more sensitive and focused PEDI use.
2014-08
Identifier
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<a href="http://doi.org/10.3109/01942638.2013.823473" target="_blank" rel="noreferrer">10.3109/01942638.2013.823473</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
2014
Backlog
Journal Article
PEDI Study
Physical & Occupational Therapy In Pediatrics
Rich D
Rigby P
Wright V
-
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/10.3109/01942638.2013.823475" target="_blank" rel="noreferrer">http://doi.org/10.3109/01942638.2013.823475</a>
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Title
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Stability of parent report on Mobility and Self-Care item scores of the Pediatric Evaluation of Disability Inventory
Publisher
An entity responsible for making the resource available
Physical & Occupational Therapy In 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
PEDI Study
Creator
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Worth M; Darrah J; Magill-Evans J; Wiart L; Law M
Description
An account of the resource
Secondary analysis using data from a clinical trial was performed to evaluate the stability of individual items of the Mobility and Self-Care functional skills scales of the Pediatric Evaluation of Disability Inventory (PEDI). Parents of 113 children aged 1-6 years old with cerebral palsy completed the PEDI twice by questionnaire 6 months apart. An item was classified "unstable" if the score changed from capable to unable. The number of children with more than five unstable items and the number of items with more than five children having unstable scoring patterns were calculated. Nineteen children (17%) and 13 items had unstable scoring patterns. The majority of PEDI items demonstrated stability of parent scoring. Examination of unstable items suggests that parents may need assistance in understanding the difference between "usual" and "best" performance, interpreting descriptors such as "thoroughly," and maintaining the same context reference for outdoor mobility items.
2014-08
Identifier
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<a href="http://doi.org/10.3109/01942638.2013.823475" target="_blank" rel="noreferrer">10.3109/01942638.2013.823475</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
2014
Backlog
Darrah J
Journal Article
Law M
Magill-Evans J
PEDI Study
Physical & Occupational Therapy In Pediatrics
Wiart L
Worth M
-
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
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URL Address
<a href="http://doi.org/10.1136/archdischild-2013-305246" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2013-305246</a>
<a href="http://adc.bmj.com/content/99/8/754.abstract" target="_blank" rel="noreferrer noopener">http://adc.bmj.com/content/99/8/754.abstract</a>
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Title
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Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions
Publisher
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Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
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PEDI Study; Metabolic; Neurodisability; Genetics
Creator
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Steele R; Siden H; Cadell S; Davies B; Andrews GS; Feichtinger L; Singh M
Description
An account of the resource
Background Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms for these children needs to begin at diagnosis, yet, little is known about their patterns of symptoms and functional abilities.Aim To describe these children's symptoms, as well as how the children's condition affects them physically.Design Cross-sectional, baseline results from an observational, longitudinal study, Charting the Territory, that followed 275 children and their families.Setting/participants Seven tertiary care children's hospitals in Canada, 2 in the USA. Families were eligible based on the child's condition. A total of 275 children from 258 families participated.Results The 3 most common symptoms in these children were pain, sleep problems, and feeding difficulties; on average, they had 3.2 symptoms of concern. There was a pattern of under-reporting of children's symptoms for clinicians compared with parents. Regardless of use of associated medications, pain, feeding and constipation symptoms were often frequent and distressing. Children with a G/J tube had a higher total number of symptoms, and respiratory problems, pain, feeding difficulties and constipation were more likely to occur. They also tended to have frequent and distressing symptoms, and to need extensive mobility modifications which, in turn, were associated with higher numbers of symptoms.Conclusions These children experience multiple symptoms that have been previously documented individually, but not collectively. Effective interventions are needed to reduce their symptom burden. Future longitudinal analyses will examine which disease-modifying interventions improve, or do not improve, symptom burden.
2014-08
Identifier
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<a href="http://doi.org/10.1136/archdischild-2013-305246" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2013-305246</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
2014
Andrews GS
Archives of Disease in Childhood
Backlog
Cadell S
Charting the territory
Davies B
Feichtinger L
Genetics
Journal Article
Metabolic
Neurodisability
PEDI Study
Siden H
Singh M
Steele R
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
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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
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URL Address
<a href="http://doi.org/10.1093/pch/20.3.155" target="_blank" rel="noreferrer">http://doi.org/10.1093/pch/20.3.155</a>
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Title
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Introducing a Lexicon of Terms for Pediatric Palliative Care
Publisher
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Paediatrics & Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
PEDI Study
Creator
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Spicer S; Macdonald ME; Davies D; Vadeboncoeur C; Siden H
Identifier
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<a href="http://doi.org/10.1093/pch/20.3.155" target="_blank" rel="noreferrer">10.1093/pch/20.3.155</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
Description
An account of the resource
2015
2015
Backlog
Davies D
Journal Article
Macdonald ME
Paediatrics & Child Health
PEDI Study
Siden H
Spicer S
Vadeboncoeur C
-
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/10.1001/archpediatrics.2009.284" target="_blank" rel="noreferrer">http://doi.org/10.1001/archpediatrics.2009.284</a>
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Title
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Palliative care of children with brain tumors: a parental perspective
Publisher
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Archives Of Pediatrics & Adolescent Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
adolescent; Child; Female; Humans; infant; Male; Young Adult; Palliative Care; home care services; Adult; Parents; Middle Aged; Attitude to Death; Qualitative Research; Focus Groups; Activities of Daily Living; Spirituality; Practice; Preschool; Adaptation; Psychological; Attitudes; Brain neoplasms; Health Knowledge; PEDI Study
Creator
An entity primarily responsible for making the resource
Zelcer S; Cataudella D; Cairney A; Elizabeth L; Bannister SL
Description
An account of the resource
OBJECTIVE: To explore the end-of-life experience of children with brain tumors and their families. DESIGN: Qualitative analysis of focus group interviews. SETTING: Children's Hospital, London Health Sciences Center. PARTICIPANTS: Twenty-five parents of 17 children who had died of brain tumors. INTERVENTION: Parents participated in 3 semistructured focus group interviews. MAIN OUTCOME MEASURES: Themes identified through thematic analysis of interview transcripts. RESULTS: Qualitative analysis identified 3 primary themes. (1) Parents described the dying trajectory of their child as characterized by progressive neurologic deterioration, with the loss of the ability to communicate as a turning point. Parental coping mechanisms included striving to maintain normality and finding spiritual strength through maintaining hope and in the resilience of their child. (2) Parental struggles during this phase included balancing competing responsibilities and speaking with their child about death. (3) Barriers to achieving a home death included suboptimal symptom management, financial and practical hardships, and inadequate community support. A fourth, secondary theme concerned the therapeutic benefits of the interview. CONCLUSION: The neurologic deterioration that characterizes the dying trajectory of children with brain tumors may create significant challenges for health care professionals and the children's parents, supporting the need for increased awareness of the distinct issues in the palliative care of children with brain tumors and for early anticipatory guidance provided for families.
2010-03
Identifier
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<a href="http://doi.org/10.1001/archpediatrics.2009.284" target="_blank" rel="noreferrer">10.1001/archpediatrics.2009.284</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
2010
Activities of Daily Living
Adaptation
Adolescent
Adult
Archives Of Pediatrics & Adolescent Medicine
Attitude To Death
Attitudes
Backlog
Bannister SL
Brain Neoplasms
Cairney A
Cataudella D
Child
Elizabeth L
Female
Focus Groups
Health Knowledge
home care services
Humans
Infant
Journal Article
Male
Middle Aged
Palliative Care
Parents
PEDI Study
Practice
Preschool
Psychological
Qualitative Research
Spirituality
Young Adult
Zelcer 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/10.1007/s11832-007-0069-6" target="_blank" rel="noreferrer">http://doi.org/10.1007/s11832-007-0069-6</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Associations between orthopaedic findings, ambulation and health-related quality of life in children with myelomeningocele
Publisher
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Journal Of Children's Orthopaedics
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
PEDI Study
Creator
An entity primarily responsible for making the resource
Danielsson AJ; Bartonek A; Levey E; McHale K; Sponseller P; Saraste H
Description
An account of the resource
PURPOSE: Modern principles for treatment of patients with myelomeningocele include early closure of the neural tube defect, neurosurgical treatment of hydrocephalus and treatment aimed at minimizing contractures and joint dislocations. The aim is to achieve a better survival rate and a better quality of life (QOL). Better ambulatory function is thought to improve the management of activities of daily living. This study focused on evaluating which factors might affect ambulation, function and health-related QOL in children with myelomeningocele. METHODS: Thirty-eight patients with neurological deficit from myelomeningocele were examined in an unbiased follow-up. This included a physical examination using validated methods for ambulatory function and neuromuscular status, chart reviews and evaluation of radiographs in terms of hip dislocation and spine deformity. The Pediatric Evaluation of Disability Inventory (PEDI) was used to measure mobility, self-care and social function, and the Child Health Questionnaire (CHQ-PF50) was used to measure QOL. RESULTS: Muscle function class, quadriceps strength, spasticity in hip and/or knee joint muscles and hip flexion contracture as well as the ambulatory level all affected functional mobility as well as self-care/PEDI. Patients with hip dislocation, spinal deformity or those who were mentally retarded also had significantly worse functional mobility. Besides being affected by the severity of the neurological lesion, self-care/PEDI was significantly impaired by hip flexion contracture and absence of functional ambulation. General health-related QOL was significantly lower in this patient group than for US norms. Nonambulatory and mentally retarded patients had a significantly lower physical function of their QOL (CHQ). CONCLUSIONS: The severity of the disease, i.e. reduced muscle strength and occurrence of spasticity around hip/knee, affected ambulation, functional mobility and self-care. Acquired deformities (hip dislocation and spine deformity) affected functional ambulation only. Patients with reduced functional mobility and self-care experienced lower physical QOL. Children with myelomeningocele had significantly reduced QOL compared to healthy individuals.
2008-02
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s11832-007-0069-6" target="_blank" rel="noreferrer">10.1007/s11832-007-0069-6</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
2008
Backlog
Bartonek A
Danielsson AJ
Journal Article
Journal Of Children's Orthopaedics
Levey E
McHale K
PEDI Study
Saraste H
Sponseller 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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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/10.1186/1471-2431-10-67" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/1471-2431-10-67</a>
Dublin Core
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Title
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Designing and implementing a longitudinal study of children with neurological, genetic or metabolic conditions: charting the territory
Publisher
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BMC Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Child; Humans; Canada; Longitudinal Studies; Mental Disorders; Biomedical Research; PEDI Study; Metabolic Diseases; Genetic Diseases; Inborn; Biomedical Research/methods; Canada; Child; Genetic Diseases Inborn/therapy; Humans; Longitudinal Studies/methods; Mental Disorders/therapy; Metabolic Diseases/therapy
Creator
An entity primarily responsible for making the resource
Siden H; Steele R; Brant R; Cadell S; Davies B; Straatman L; Widger K; Andrews GS
Description
An account of the resource
BACKGROUND: Children with progressive metabolic, neurological, or chromosomal conditions and their families anticipate an unknown lifespan, endure unstable and often painful symptoms, and cope with erratic emotional and spiritual crises as the condition progresses along an uncertain trajectory towards death. Much is known about the genetics and pathophysiology of these diseases, but very little has been documented about the trajectory of symptoms for children with these conditions or the associated experience of their families. A longitudinal study design will help to close this gap in knowledge. METHODS/DESIGN: Charting the Territory is a longitudinal descriptive, correlational study currently underway with children 0-19 years who are diagnosed with progressive neurological, metabolic, or chromosomal conditions and their families. The purpose of the study is to determine and document the clinical progression of the condition and the associated bio-psychosocial-spiritual experiences of the parents and siblings age 7-18 years. Approximately 300 families, both newly diagnosed children and those with established conditions, are being recruited in six Canadian cities. Children and their families are being followed for a minimum of 18 months, depending on when they enroll in the study. Family data collection will continue after the child's death if the child dies during the study period. Data collection includes monthly parental assessment of the child's symptoms; an annual functional assessment of the child; and completion of established instruments every 6 months by parents to assess family functioning, marital satisfaction, health status, anxiety, depression, stress, burden, grief, spirituality, and growth, and by siblings to assess coping and health. Impact of participation on parents is assessed after 1 year and at the end of the study. Chart reviews are conducted at enrollment and at the conclusion of the study or at the time of the child's death. DISCUSSION: Knowledge developed from this study will provide some of the first-ever detailed descriptions of the clinical symptom trajectory of these non-curable progressive conditions and the bio-psychosocial-spiritual aspects for families, from diagnosis through bereavement. Information about developing and implementing this study may be useful to other researchers who are interested in designing a longitudinal study.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/1471-2431-10-67" target="_blank" rel="noreferrer noopener">10.1186/1471-2431-10-67</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
2010
Andrews GS
Backlog
Biomedical Research
Bmc Pediatrics
Brant R
Cadell S
Canada
Child
Davies B
Genetic Diseases
Humans
inborn
Journal Article
Longitudinal Studies
Mental Disorders
Metabolic Diseases
PEDI Study
Siden H
Steele R
Straatman L
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
Backlog
URL Address
<a href="http://search.ebscohost.com/login.aspx?direct=true&db=mnh&AN=20719816&site=ehost-live&scope=site" target="_blank" rel="noreferrer">http://search.ebscohost.com/login.aspx?direct=true&db=mnh&AN=20719816&site=ehost-live&scope=site</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
Disease trajectories and ACT/RCPCH categories in paediatric palliative care
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Child; Female; Humans; Male; Palliative Care; Family; Attitude to Health; Interviews as Topic; Professional-Family Relations; Disease Progression; caregivers; Qualitative Research; Focus Groups; Wales; Caregivers/psychology; Family/psychology; PEDI Study; Palliative Care/psychology; Attitude to Health; Disease Progression
Creator
An entity primarily responsible for making the resource
Wood F; Simpson S; Barnes E; Hain R
Description
An account of the resource
The objective of this study was to provide a preliminary description of trajectories of life-limiting conditions (LLCs) using qualitative experiential data. Semi-structured interviews were conducted with families of children with LLCs, selected to encompass all Association for Children's Palliative Care (ACT)/Royal College of Paediatrics and Child Health (RCPCH) categories, using a schedule developed from focus groups of professionals. Thirty out of 76 families agreed to participate. Four of these were unsuitable. In nine out of 26 families, their child had died. In eight out of the 26, two individuals were interviewed. Twenty-four mothers, nine fathers, one sibling and two foster-carers were interviewed in total. The interview schedule was developed from data from four themed focus groups, comprising 25 professionals from 14 backgrounds. Thirty-four milestones in five phases were identified: Diagnosis, Loss of normality, Adjusting to new normality, Palliative phase and Death. Many milestones were common to all categories, suggesting that the ACT/RCPCH system encompasses related conditions. Others occurred in only some, suggesting trajectories in the categories are distinct. Significant themes emerging from qualitative data were: becoming expert in their child, concerns about service provision, information needs and relationships with health professionals. By presenting qualitative descriptive data regarding the lived experience of families of children with LLCs, this study provides preliminary evidence that the ACT/RCPCH categories are suitable tools for research and service development.;
2010-12
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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
2010
Attitude To Health
Backlog
Barnes E
Caregivers
Caregivers/psychology
Child
Disease Progression
Family
Family/psychology
Female
Focus Groups
Hain R
Humans
Interviews As Topic
Journal Article
Male
Palliative Care
Palliative Care/psychology
Palliative Medicine
PEDI Study
Professional-family Relations
Qualitative Research
Simpson S
Wales
Wood F
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1016/j.pedn.2005.03.003" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.pedn.2005.03.003</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
A framework for integrated pediatric palliative care: being with dying
Publisher
An entity responsible for making the resource available
Journal Of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Child; Female; Humans; Male; Palliative Care; patient care team; decision making; Parents; Cooperative Behavior; Goals; Nurse's Role; Pediatric Nursing; Interprofessional Relations; Conflict (Psychology); Holistic Health; Self Care; Self-Assessment; Benchmarking; Leukemia; Philosophy; Uncertainty; Myeloid; quality of life; PedPal Lit; Models; PEDI Study; Acute; Nursing; Organizational
Creator
An entity primarily responsible for making the resource
Rushton CH
Description
An account of the resource
Recent studies highlight the need for an integrated model for palliative and end-of-life pediatric care. About 55,000 children die each year in the United States and, on any given day, about 8,600 children could benefit from care that acknowledges their limited life expectancy and severity of illness. Two case studies of children illustrate different approaches-one that aggressively applies all possible technologies to maximize chances of survival and another that focuses on the patient's overall quality of life and on healing rather than curing. The cases highlight characteristics of an integrated model of palliative care to address clinical, moral, and ethical uncertainties. This model integrates being with doing, provides for developing attunement and presence as capacities for being with children and their parents, and addresses challenges in the healthcare environment. Strategies for integrating palliative care into pediatric practice include listening, fostering respect for the child and parents across the organization, nurturing collaborative connections, managing uncertainty, tolerating ambiguity, making peace with conflict, and committing to self-care. Every pediatric nurse can play a role in making the vision of palliative care a reality integrated into the fabric of pediatric practice.
2005-10
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.pedn.2005.03.003" target="_blank" rel="noreferrer">10.1016/j.pedn.2005.03.003</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
2005
Acute
Backlog
Benchmarking
Child
Conflict (Psychology)
Cooperative Behavior
Decision Making
Female
Goals
Holistic Health
Humans
Interprofessional Relations
Journal Article
Journal of Pediatric Nursing
Leukemia
Male
Models
Myeloid
Nurse's Role
Nursing
Organizational
Palliative Care
Parents
Patient Care Team
PEDI Study
Pediatric Nursing
PedPal Lit
Philosophy
Quality Of Life
Rushton CH
Self Care
Self-Assessment
Uncertainty
-
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/10.1080/09638280500212013" target="_blank" rel="noreferrer">http://doi.org/10.1080/09638280500212013</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
Assessment of everyday functioning in young children with disabilities: an ICF-based analysis of concepts and content of the Pediatric Evaluation of Disability Inventory (PEDI)
Publisher
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Disability And Rehabilitation
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Humans; Interpersonal Relations; disabled children; caregivers; Activities of Daily Living; Self Care; Psychometrics; Disability Evaluation; PEDI Study; Mobility Limitation
Creator
An entity primarily responsible for making the resource
Østensjø S; Bjorbaekmo W; Carlberg EB; Vøllestad NK
Description
An account of the resource
BACKGROUND: Assessment of everyday functioning in children may depend to a considerable extent on the framework used to conceptualise functioning and disability. The Pediatric Evaluation of Disability Inventory (PEDI) has incorporated the mediating role of the environment on disability, using different measurement scales. The construction of the Functional Skills scales, which measure capability, and the Caregiver Assistance scales, which measure performance, was based on the Nagi disablement scheme. The International Classification of Functioning, Disability and Health (ICF) represents a new framework of functioning and disability that could be used to compare the measurement constructs and the content of different outcome measurements. PURPOSE: To examine the conceptual basis and the content of the PEDI using the ICF. METHOD: Phrases that describe the conceptual basis of the PEDI scales and of the ICF classifications were systematically collected and compared. Two researchers classified the item content of the Functional Skills scales independently before consensus was reached. RESULTS: The analyses indicate that the conceptual basis of the PEDI scales to a large extent match the ICF concepts of activity, participation and environmental factors. Both the PEDI and the ICF use the constructs of capacity and performance, but differ in how to operationalise these constructs. The classification of the Functional Skills scales shows that the PEDI primarily is a measure of activities and participation. The frequently use of environmental codes to classify the context of the requested functions demonstrates that the PEDI has incorporated the environment into the assessment. CONCLUSIONS: Our analyses indicate that the ICF could serve as a conceptual framework to clarify the measurement construct of the PEDI scales, and as taxonomy to describe and clarify the item content of the Functional Skills scales. Both as framework and taxonomy the ICF showed limitations in covering functioning in early childhood.
2006-04
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/09638280500212013" target="_blank" rel="noreferrer">10.1080/09638280500212013</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
2006
Activities of Daily Living
Backlog
Bjorbaekmo W
Caregivers
Carlberg EB
Child
Disability And Rehabilitation
Disability Evaluation
Disabled Children
Humans
Interpersonal Relations
Journal Article
Mobility Limitation
Østensjø S
PEDI Study
Psychometrics
Self Care
Vøllestad NK
-
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/10.1097/01.PEP.0000050765.71924.6C" target="_blank" rel="noreferrer">http://doi.org/10.1097/01.PEP.0000050765.71924.6C</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
Item-specific functional recovery in children and youth with acquired brain injury
Publisher
An entity responsible for making the resource available
Pediatric Physical Therapy: The Official Publication Of The Section On Pediatrics Of The American Physical Therapy Association
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
PEDI Study
Creator
An entity primarily responsible for making the resource
Tokcan G; Haley SM; Gill-Body KM; Dumas HM
Description
An account of the resource
PURPOSE: The purpose of this study was to examine changes in item-specific functional activities and caregiver support in children and youths with acquired brain injury (ABI) in an inpatient setting using the Pediatric Evaluation of Disability Inventory (PEDI). METHODS: The PEDI was administered by therapy staff at admission and discharge to a consecutive sample of 94 children and youths with brain injury (62 males and 32 females; age range = one to 19 years of age) admitted to the inpatient service at Franciscan Children's Hospital and Rehabilitation Center during a two-year, 10-month period. Individual PEDI item scores were abstracted from the medical records. RESULTS: Using the Wilcoxon matched-pairs signed rank test (two-tailed), significant differences between admission and discharge scores were found for most mobility, self-care, and social activity item groups and for all domains of caregiver support. Patterns of activity-specific improvements were contrasted between children with traumatic ABI and those with nontraumatic ABI. CONCLUSIONS: Recovery in children with ABI can be detected during inpatient rehabilitation across many areas of functioning as represented by item content of the PEDI. Changes at the item level may serve as a guide for defining specific physical therapy goals for inpatient episodes. Item groups in which changes are not detected provide information about sections of the PEDI that are less relevant for hospital-based recovery of children with ABI.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.PEP.0000050765.71924.6C" target="_blank" rel="noreferrer">10.1097/01.PEP.0000050765.71924.6C</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
2003
Backlog
Dumas HM
Gill-Body KM
Haley SM
Journal Article
PEDI Study
Pediatric Physical Therapy: The Official Publication Of The Section On Pediatrics Of The American Physical Therapy Association
Tokcan G
-
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/10.1080/j006v21n02_08" target="_blank" rel="noreferrer">http://doi.org/10.1080/j006v21n02_08</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
Concurrent validity of the Functional Independence Measure for Children (WeeFIM) and the Pediatric Evaluation of Disabilities Inventory in children with developmental disabilities and acquired brain injuries
Publisher
An entity responsible for making the resource available
Physical & Occupational Therapy In 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; infant; Male; disabled children; Developmental Disabilities; Psychometrics; Health Status Indicators; Disability Evaluation; Preschool; PEDI Study; Brain Injuries; Spinal Dysraphism
Creator
An entity primarily responsible for making the resource
Ziviani J; Ottenbacher KJ; Shephard K; Foreman S; Astbury W; Ireland P
Description
An account of the resource
The Functional Independence Measure for Children (WeeFIM) and the Pediatric Evaluation of Disability Inventory (PEDI) are the most commonly used measures of functional performance in children. The purpose of this study was to determine the concurrent validity of the instruments when used with children with developmental disabilities and acquired brain injury. The subjects were 41 children, age 1.3 to 9.5 years, who were receiving inpatient or outpatient services at a pediatric rehabilitation unit in Brisbane, Australia. Spearman correlation coefficients between the two tests were greater than 0.88 for self care, transportation/locomotion, and communication/social function. The high correlations indicate that the two tests measure similar constructs. Choosing between the tests depends on situational requirements and depth of information required.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/j006v21n02_08" target="_blank" rel="noreferrer">10.1080/j006v21n02_08</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
Astbury W
Backlog
Brain Injuries
Child
Developmental Disabilities
Disability Evaluation
Disabled Children
Female
Foreman S
Health Status Indicators
Humans
Infant
Ireland P
Journal Article
Male
Ottenbacher KJ
PEDI Study
Physical & Occupational Therapy In Pediatrics
Preschool
Psychometrics
Shephard K
Spinal Dysraphism
Ziviani 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/10.1177/1049909110380594" target="_blank" rel="noreferrer">http://doi.org/10.1177/1049909110380594</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
Quality of life for children with life-limiting and life-threatening illnesses: description and evaluation of a regional, collaborative model for pediatric palliative care
Publisher
An entity responsible for making the resource available
The American Journal Of Hospice & Palliative Care
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; Humans; infant; Male; Palliative Care; Terminal Care; referral and consultation; Pediatrics; Health Personnel; Program Evaluation; Continuity of Patient Care; Biomedical Research; Inservice Training; District of Columbia; quality of life; Preschool; Newborn; PEDI Study; Quality of Health Care
Creator
An entity primarily responsible for making the resource
Rogers SK; Gomez CF; Carpenter P; Farley J; Holson D; Markowitz M; Rood B; Smith K; Nigra Peter
Description
An account of the resource
The care of children in the U.S. with life-limiting illnesses is inadequate. Misallocated resources, flawed assumptions and models of care, and a lack of appropriate professional education foster a costly, inefficient system that falls short of its true potential. This article details the evolution of a regional, shared approach to address these issues, the District of Columbia Pediatric Palliative Care Collaboration (DCPPCC), and includes its evolution, preliminary clinical results, and assessment of barriers encountered.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909110380594" target="_blank" rel="noreferrer">10.1177/1049909110380594</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
Biomedical Research
Carpenter P
Child
Continuity Of Patient Care
District of Columbia
Farley J
Female
Gomez CF
Health Personnel
Holson D
Humans
Infant
Inservice Training
Journal Article
Male
Markowitz M
Newborn
Nigra Peter
Palliative Care
PEDI Study
Pediatrics
Preschool
Program Evaluation
Quality Of Health Care
Quality Of Life
Referral And Consultation
Rogers SK
Rood B
Smith K
Terminal Care
The American Journal of Hospice & Palliative 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
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