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40
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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2020 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1097/ncc.0000000000000721" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/ncc.0000000000000721</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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Using Patient-Reported Outcomes to Measure Symptoms in Children With Advanced Cancer
Publisher
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Cancer Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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cancer; oncology; pediatric cancer; symptoms; patient-reported outcomes
Creator
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Montgomery K E; Raybin J L; Ward J; Balian C; Gilger E; Murray P; Li Z
Description
An account of the resource
BACKGROUND: Children with advanced cancer experience symptoms despite access to quality care. Symptom research has previously relied upon retrospective designs and parent proxy rather than prospective measurement with self-report. OBJECTIVE: This study evaluated the feasibility of electronic data collection in children with advanced cancer using self-report of symptom frequency, severity, and distress. METHODS: A multisite prospective cohort design was used for this study. Children who were 7 to 18 years of age and English-speaking and had a diagnosis of advanced cancer were included. Symptom frequency, severity, and level of distress were measured every 2 weeks. RESULTS: Forty-six children completed 563 of 622 (91%) administered electronic symptom assessments. Pain, fatigue, nausea, and sleeping difficulties were the most reported symptoms across all assessments and during the last 12 weeks of life. Symptoms with the highest composite scores included pain, fatigue, nausea, and sleeping difficulties. During the last 12 weeks of life, pain, fatigue, diarrhea, and sleeping difficulties had the highest composite scores. When the domains of frequency, severity, and distress were compared between groups, children reported significantly higher frequency of pain and eating difficulty during the last 12 weeks of life. CONCLUSIONS: Electronic data collection is a feasible way to evaluate the constellation of symptoms. Children with advanced cancer continue to experience physical and psychological symptoms, especially during the last 12 weeks of life despite quality care. IMPLICATIONS FOR PRACTICE: Assessment of symptom domains, including frequency, severity, and distress when symptoms are present may allow clinicians to better understand and manage symptoms of most concern to the patient.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/ncc.0000000000000721" target="_blank" rel="noreferrer noopener">10.1097/ncc.0000000000000721</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).
2020
Balian C
Cancer
Cancer Nursing
Gilger E
Li Z
Montgomery K E
Murray P
Oncology
Oncology 2020 List
Patient-reported Outcomes
Pediatric Cancer
Raybin J L
Symptoms
Ward J
-
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
2020 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1111/jspn.12316" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/jspn.12316</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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Comparison of child self-report and parent proxy-report of symptoms: Results from a longitudinal symptom assessment study of children with advanced cancer
Publisher
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Journal for Specialists in Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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pediatric; childhood cancer; symptoms; advanced cancer
Creator
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Montgomery K E; Vos K; Raybin J L; Ward J; Balian C; Gilger E A; Li Z
Description
An account of the resource
PURPOSE: This report represents a subanalysis of data from a primary study and addresses a gap in understanding the similarities and differences of symptom reporting between children with advanced cancer and their parents. The objectives of this subanalysis were to (1) compare reports of symptom prevalence, symptom burden, and symptom frequency, severity, and distress between groups of children and adolescents and their parents, and (2) describe concordance of symptom reports within individual child-parent dyads. DESIGN AND METHODS: Forty-six children with relapsed, refractory, or progressive cancer and their parents from five pediatric cancer centers prospectively reported symptoms every 2 weeks for up to 61 weeks. The abbreviated Pediatric Quality of Life and Evaluation of Symptoms Technology-Memorial Symptom Assessment Scales were used to measure symptom prevalence, frequency, severity, and distress. RESULTS: Children and parents reported pain, fatigue, nausea, and sleeping difficulties as the most frequently occurring symptoms. With the exception of shortness of breath, parents reported symptom prevalence more often than children. The differences in parent reports were statistically significant for fatigue, nausea, lack of appetite, feeling nervous, and sadness. Parents reported higher symptom burden scores compared to children for all individual symptoms except shortness of breath. Children reported higher scores for 19 of 32 possible symptom frequency, severity, and distress ratings. Children's scores were higher for frequency and severity, while parents' scores were higher for distress. Sleeping difficulties, pain, nausea, and diarrhea demonstrated the highest concordance, while feeling nervous, sadness, irritability, and fatigue yielded the lowest concordance between children's and parents' symptom reports. PRACTICE IMPLICATIONS: Eliciting the symptom experience from the child, when appropriate, rather than a parent proxy is best practice given evidence supporting the overestimation of symptom prevalence by parents and underestimation of symptom frequency and severity for some symptoms. When proxy raters must be used, pediatric nurses should educate proxy raters regarding symptom assessment, and assess and tend to symptoms that may not exhibit visual cues. Pediatric nurses should conduct a comprehensive symptom assessment and evaluate beyond the presence of symptoms and include an assessment of frequency, severity, and distress for physical and psychological symptoms to optimize symptom management strategies.
Identifier
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<a href="http://doi.org/10.1111/jspn.12316" target="_blank" rel="noreferrer noopener">10.1111/jspn.12316</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).
2020
Advanced Cancer
Balian C
Childhood Cancer
Gilger E A
Journal for Specialists in Pediatric Nursing
Li Z
Montgomery K E
Oncology 2020 List
Pediatric
Raybin J L
Symptoms
Vos K
Ward J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
August 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.04.078" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.04.078</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 of Children and Adolescents Undergoing Hematopoietic Stem Cell Transplantation Is Negatively Affected by Psychological Distress Experienced by Their Parents: A Case for Pediatric Palliative Care (RP410)
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
chimeric antigen receptor t-cell therapy; hematopoietic stem cell transplantation; parental experience; pediatric palliative care; quality of life
Creator
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Balian C; Ward J; Murray P
Description
An account of the resource
Objectives: * State the elements and trajectory of distress for parents caring for children and adolescents undergoing hematopoietic stem cell transplantation (HSCT) or chimeric antigen receptor (CAR) T-cell therapy. * Examine the impact of parent distress on symptoms and quality of life (QoL) experienced by children and adolescents undergoing HSCT or CAR T-cell therapy. Importance: Hematopoietic stem cell transplantation (HSCT) is curative for children with life-threatening conditions but can result in compromised quality of life (QoL). Parents provide extensive care for their children and can experience distress, yet the association between parent and child outcomes has not been sufficiently investigated. Objective(s): To examine the impact of parent distress on QoL among children undergoing HSCT or chimeric-antigen receptor (CAR) T cell therapy. Method(s): This multisite study employed a longitudinal, repeated measures design. English or Spanish-speaking children ages 2-18 years, with any diagnosis, and planned HSCT or CAR therapy were eligible. Beck Anxiety and Depression Inventories, the Perceived Stress Scale and the PROMIS Sleep and Fatigue Short Forms were administered to parents pre-HSCT/CAR, and day+30, +60, +90 post-HSCT/CAR. The PedsQL Cancer Module was administered to children (parent-proxy for younger children) at corresponding timepoints. Descriptive statistics and longitudinal parallel process (type of effect modeling) analyses were used to explore relationships between parent distress (a single factor consisting of sleep, fatigue, anxiety, depression and stress) and child outcomes. Result(s): To date, 139 child/parent dyads (278 participants) were enrolled across 4 sites. Child mean age was 8.3 years (SD=4.9), 57% were male, primarily with an underlying diagnosis of malignancy (68.9%). Most parents were mothers (79.1%), mean age of 38.9 years (SD=8.1). Parent anxiety, depression and stress scores were higher than normative means generated from non-psychiatric samples. A significant inverse relationship between parent distress and child QoL was found at baseline and over time post-HSCT. When parent distress was higher at baseline, child QoL was lower. When parent distress increased over time, child QoL decreased. Conclusion(s): Findings suggest that parents experience heightened distress during the acute phase of their child's HSCT or CAR therapy, and this may impact their child's QoL. Impact: Up front palliative care involvement and integration should be considered for children undergoing HSCT or CAR therapy to address parent and child distress. Copyright © 2020
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2020.04.078" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.04.078</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).
2020
August 2020 List
Balian C
chimeric antigen receptor t-cell therapy
Hematopoietic stem cell transplantation
Journal of Pain and Symptom Management
Murray P
parental experience
Pediatric Palliative Care
Quality Of Life
Ward J
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1017/S0012162205001374" target="_blank" rel="noreferrer noopener">http://doi.org/10.1017/S0012162205001374</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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Behavioral aspects of Lesch-Nyhan disease and its variants
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
2005
Subject
The topic of the resource
Adolescent; Adult; Aggression; Anxiety; Child; Depression; Female; Humans; Lesch-Nyhan Syndrome/px [Psychology]; Male; Self-Injurious Behavior; self-injury; Severity of Illness Index; alertness; behavioral problems; Lesch-Nyhan syndrome; trajectory; characteristics; distractibility
Creator
An entity primarily responsible for making the resource
Schretlen D J; Ward J; Meyer S M; Yun J; Puig J G; Nyhan W L; Jinnah H A; Harris J C
Description
An account of the resource
Self-injury is a defining feature of lesch-nyhan disease (LND) but does not occur in the less severely affected Lesch-Nyhan variants (LNV). The aim of this study was to quantify behavioral and emotional abnormalities in LND and LNV. Thirty-nine informants rated 22 patients with LND (21 males, 1 female), 11 males with LNV, and 11 healthy controls (HC; 10 males, 1 female) using two well-validated rating scales. The age of patients with LND ranged from 12 years 7 months to 38 years 3 months (mean 22 y 11 mo; sd 7 y 8 mo), whereas the age range of those with LNV was 12 years 9 months to 65 years (mean 30 y 7 mo; sd 15 y 2 mo), and the healthy controls were aged 12 years 4 months to 31 years 3 months (mean 17 y 10 mo; sd 5 y 7 mo). Behavioral ratings were based on the Child Behavior Checklist and the American Association On Mental Retardation's Adaptive Behavior Scale--Residential And Community, 2nd edition. Statistical analyses revealed that patients with LND showed severe self-injury together with problematic aggression, anxious-depressed symptoms, distractibility, motor stereotypes, and disturbing interpersonal behaviors. Patients with LNV were rated as being intermediate between the HC and LND groups on all behavior scales. Although the LNV group did not differ from hcs on most scales, their reported attention problems were as severe as those found in LND. We conclude that self-injurious and aggressive behaviors are nearly universal and that other behavioral abnormalities are common in LND. Although patients with LNV typically do not self-injure or display severe aggression, attention problems are common and a few patients demonstrate other behavioral anomalies.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/S0012162205001374" target="_blank" rel="noreferrer noopener">10.1017/S0012162205001374</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).
2005
Adolescent
Adult
Aggression
alertness
anxiety
behavioral problems
characteristics
Child
Depression
Developmental Medicine and Child Neurology
distractibility
Female
Harris J C
Humans
Jinnah H A
Lesch-Nyhan syndrome
Lesch-Nyhan Syndrome/px [Psychology]
Male
Meyer S M
Nyhan W L
Puig J G
Schretlen D J
Self-Injurious behavior
self-injury
Severity Of Illness Index
Trajectory
Ward J
Yun J