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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
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/10.1016/j.ctim.2019.102263" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ctim.2019.102263</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
Massage therapy for symptom reduction and improved quality of life in children with cancer in palliative care: A pilot study
Publisher
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Complementary Therapies in Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
child; human; palliative therapy; controlled study; female; male; article; Quality of Life; adolescent; clinical article; pain; Massage; follow up; quantitative study; pilot study; expectation; leukemia; lymphoma; sarcoma; carcinoma; pain measurement; patient worry
Creator
An entity primarily responsible for making the resource
Genik L M; McMurtry C M; Marshall S; Rapoport A; Stinson J
Description
An account of the resource
Background: For children with cancer in palliative care, pain and worry are common and frequently under-managed, which negatively impacts quality of life (QOL). Massage therapy (MT) can lead to reduced pain in children with chronic illnesses. Children with cancer have experienced lower anxiety after MT. No studies have examined the effects of MT in pediatric oncology patients receiving palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ctim.2019.102263" target="_blank" rel="noreferrer noopener">10.1016/j.ctim.2019.102263</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
Adolescent
Article
Carcinoma
Child
Clinical Article
Complementary Therapies in Medicine
Controlled Study
Expectation
Female
Follow Up
Genik L M
Human
Leukemia
Lymphoma
Male
Marshall S
Massage
McMurtry C M
Oncology 2020 List
Pain
Pain Measurement
Palliative Therapy
patient worry
Pilot Study
Quality Of Life
Quantitative Study
Rapoport A
Sarcoma
Stinson 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/cjn.2016.8" target="_blank" rel="noreferrer noopener">http://doi.org/10.1017/cjn.2016.8</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 Incidence and Evolution of Parkinsonian Rigidity in Rett Syndrome: A Pilot Study
Publisher
An entity responsible for making the resource available
Canadian Journal of Neurological Sciences
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; age; pharmacokinetics; neck; major clinical study; priority journal; scoring system; pilot study; quantitative study; cohort analysis; cross-sectional study; dopamine; prospective study; human; article; child; female; adult; disease severity; speech; dystonia; Rett syndrome; methyl CpG binding protein 2; methyl CpG binding protein 2/ec [Endogenous Compound]; mecp2; rigidity; 5 hydroxyindoleacetic acid; ankle; cerebrospinal fluid; Dopamine; genetic susceptibility; homovanillic acid; homovanillic acid/ec [Endogenous Compound]; hva; incidence; missense mutation; mobilization; muscle rigidity; muscle tone; musculoskeletal disease assessment; parkinsonism; Rett syndrome rigidity distribution score; walking difficulty; tone and motor problems; trajectory; characteristics; rigidity
Creator
An entity primarily responsible for making the resource
Humphreys P; Barrowman N
Description
An account of the resource
Background: Patients with Rett syndrome (RTT) may demonstrate parkinsonian features. Here, we report a preliminary cross-sectional and prospective evaluation of the evolution, regional distribution, and eventual incidence of rigid tone in a cohort of MECP2 mutation-positive patients. Methods: In 51 participants, muscle tone rigidity in extremity regions and neck plus hypomimia were quantified using an RTT rigidity distribution (RTTRD) score with a range of 0 to 15. RTTRD scores were correlated with age, ability to walk and speak, mutation type, and, in a small subgroup (n=9), cerebrospinal fluid (CSF) homovanillic acid (HVA) and 5-hydroxyindole-acetic acid levels. Results: Participant ages ranged from 2 years and 5 months, to 54 years. Rigidity was found in 43/51 (84.3%); it appeared as early as age 3, increased in extent with age, and was present in all participants aged >13. Ankle region rigidity appeared first, followed by proximal legs, arms, neck, and face. Ambulatory participants (n=21) had lower RTTRD scores than nonambulatory (n=30; p=0.003). We found a trend to lower scores in participants with retained speech (n=13) versus those with none (n=38; p=0.074), and no difference in scores for those with truncating (n=25) versus missense mutations (n=22; p=0.387). RTTRD scores correlated negatively with CSF HVA levels (R=-0.83; p=0.005), but not with 5-hydroxyindole-acetic acid levels (R=-0.45; p=0.22). Conclusions: Although assessment of muscle tone is somewhat subjective and the RTTRD has not been validated, this study nevertheless suggests that parkinsonian rigidity in RTT is common and frequently increases in extent with age; its severity correlates directly with impaired ambulation and inversely with CSF HVA levels. Copyright © The Canadian Journal of Neurological Sciences Inc. 2016.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/cjn.2016.8" target="_blank" rel="noreferrer noopener">10.1017/cjn.2016.8</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
5 hydroxyindoleacetic acid
Adolescent
Adult
Age
ankle
Article
Barrowman N
Canadian Journal of Neurological Sciences
Cerebrospinal Fluid
characteristics
Child
Cohort Analysis
Cross-sectional Study
Disease Severity
Dopamine
Dystonia
Female
genetic susceptibility
homovanillic acid
homovanillic acid/ec [Endogenous Compound]
Human
Humphreys P
hva
Incidence
Major Clinical Study
mecp2
methyl CpG binding protein 2
methyl CpG binding protein 2/ec [Endogenous Compound]
missense mutation
mobilization
muscle rigidity
muscle tone
musculoskeletal disease assessment
neck
parkinsonism
Pharmacokinetics
Pilot Study
Priority Journal
Prospective Study
Quantitative Study
Rett syndrome
Rett syndrome rigidity distribution score
rigidity
scoring system
Speech
tone and motor problems
Trajectory
walking difficulty
-
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/10.1111/dmcn.13398" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/dmcn.13398</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
Quantification of walking-based physical activity and sedentary time in individuals with Rett syndrome
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
2017
Subject
The topic of the resource
adolescent; major clinical study; data base; quantitative study; cross-sectional study; seizure; linear regression analysis; human; female; controlled study; adult; Rett syndrome; walking; model; scoliosis; wakefulness; tone and motor problems; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Downs J; Leonard H; Wong K; Newton N; Hill K
Description
An account of the resource
Aim: To quantify, in individuals with Rett syndrome with the capacity to walk, walking-based activity and sedentary time, and to analyse the influences of age, walking ability, scoliosis, and the severity of epilepsy. Method: Sixty-four participants with a mean age of 17 years and 7 months (standard deviation [SD] 9y) were recruited from the Australian Rett Syndrome Database for this cross-sectional study. Each participant wore a StepWatch Activity Monitor for at least 4 days. Linear regression models were used to assess relationships between daily step count and the proportion of waking hours spent in sedentary time with the covariates of age group, walking ability, presence of scoliosis, and frequency of seizures. Results: On average, 62% (SD 19%) of waking hours were sedentary and 20% (SD 8%) was at cadences lower than or equal to 20 steps in a minute. The median daily steps count was 5093 (interquartile range 2026-8602). Compared with females younger than 13 years of age and accounting for the effects of covariates, adults took fewer steps, and both adolescents and adults had more sedentary time. Interpretation: Adolescents and adults led the least active lives and would appear to be in particular need of interventions aiming to optimize slow walking-based physical activity and reduce sedentary time. Copyright © 2017 Mac Keith Press.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/dmcn.13398" target="_blank" rel="noreferrer noopener">10.1111/dmcn.13398</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
Adolescent
Adult
characteristics
Controlled Study
Cross-sectional Study
Data Base
Developmental Medicine and Child Neurology
Downs J
Female
Hill K
Human
Leonard H
linear regression analysis
Major Clinical Study
Model
Newton N
Quantitative Study
Rett syndrome
scoliosis
Seizure
tone and motor problems
Trajectory
Wakefulness
Walking
Wong 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
March 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
Bringing Home To The Hospital: Development Of The Reflection Room And Provider Perspectives
Publisher
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Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Intensive Care Unit; Posthumous Care; Terminal Care; Child; Family; Hospital Patient; Human; Major Clinical Study; Model; Privacy; Quantitative Study; Staff; United States
Creator
An entity primarily responsible for making the resource
Vesely C; Newman V; Winters Y; Flori H
Description
An account of the resource
Background: Alternative locations for children near end of life (EOL) are lacking in the United States with deaths largely occurring within intensive care units (ICUs). The reflection room (RR) was implemented as a relevant space for providing this care in our hospital. Objective: We hypothesized staff would report a positive experience in providing EOL and/or postmortem (PM) care here and would recommend this to peers. Design: This explorative study summarized room use data and evaluated staff experiences using a voluntary qualitative and quantitative survey. Subjects: The survey was administered to the inpatient interdisciplinary team. Results: From 2011 to 2014, 116 children used the RR, 64% for PM care, and 34% for EOL care. A total of 201 staff responded to the survey. Of them, 90% described the space as a valuable resource to families, 90% reported a preference for using this location versus a hospital unit, and 93% stated they would encourage their peers to do the same. Advantages listed were increased privacy, allowance for more visitors, and a quieter, calmer environment. Challenges included distance from the unit of transfer, managing assignments in two hospital locations, and medication transportation. Overall, there was a measureable decrease in the number of deaths pronounced in the ICU as the number pronounced in the RR increased, illustrating a significant change in practice. Conclusion: This study demonstrated an overwhelmingly positive experience in providing EOL and/or PM care to children in the RR and staff would recommend this to peers. This model of care should be a serious consideration for hospitals in the United States. © Copyright 2017, Mary Ann Liebert, Inc.
Identifier
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10.1089/jpm.2016.0070
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
Family
Flori H
Hospital Patient
Human
Intensive Care Unit
Journal of Palliative Medicine
Major Clinical Study
March 2017 List
Model
Newman V
Posthumous Care
Privacy
Quantitative Study
Staff
Terminal Care
United States
Vesely C
Winters Y