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40
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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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<a href="http://doi.org/10.1016/S1474-4422(09)70271-6" target="_blank" rel="noreferrer">http://doi.org/10.1016/S1474-4422(09)70271-6</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
A name given to the resource
Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and pharmacological and psychosocial management
Publisher
An entity responsible for making the resource available
Lancet Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Female; Humans; Male; Diagnosis; Differential; Duchenne/diagnosis/genetics/therapy; Glucocorticoids/administration & dosage/adverse effects/therapeutic use; Muscular Dystrophy
Creator
An entity primarily responsible for making the resource
Bushby K; Finkel R; Birnkrant DJ; Case LE; Clemens PR; Cripe L; Kaul A; Kinnett K; McDonald C; Pandya S; Poysky J; Shapiro F; Tomezsko J; Constantin C; DMD Care Considerations Working Group
Description
An account of the resource
Duchenne muscular dystrophy (DMD) is a severe, progressive disease that affects 1 in 3600-6000 live male births. Although guidelines are available for various aspects of DMD, comprehensive clinical care recommendations do not exist. The US Centers for Disease Control and Prevention selected 84 clinicians to develop care recommendations using the RAND Corporation-University of California Los Angeles Appropriateness Method. The DMD Care Considerations Working Group evaluated assessments and interventions used in the management of diagnostics, gastroenterology and nutrition, rehabilitation, and neuromuscular, psychosocial, cardiovascular, respiratory, orthopaedic, and surgical aspects of DMD. These recommendations, presented in two parts, are intended for the wide range of practitioners who care for individuals with DMD. They provide a framework for recognising the multisystem primary manifestations and secondary complications of DMD and for providing coordinated multidisciplinary care. In part 1 of this Review, we describe the methods used to generate the recommendations, and the overall perspective on care, pharmacological treatment, and psychosocial management.
2010
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/S1474-4422(09)70271-6" target="_blank" rel="noreferrer">10.1016/S1474-4422(09)70271-6</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2010
Backlog
Birnkrant DJ
Bushby K
Case LE
Clemens PR
Constantin C
Cripe L
Diagnosis
Differential
DMD Care Considerations Working Group
Duchenne/diagnosis/genetics/therapy
Female
Finkel R
Glucocorticoids/administration & dosage/adverse effects/therapeutic use
Humans
Journal Article
Kaul A
Kinnett K
Lancet Neurology
Male
McDonald C
Muscular Dystrophy
Pandya S
Poysky J
Shapiro F
Tomezsko 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/10.1097/01.FCH.0000290542.10458.f8" target="_blank" rel="noreferrer">http://doi.org/10.1097/01.FCH.0000290542.10458.f8</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
Family function in families of children with Duchenne muscular dystrophy
Publisher
An entity responsible for making the resource available
Family & Community Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Child; Cross-Sectional Studies; Female; Humans; Male; Adult; Questionnaires; Middle Aged; Family Relations; Age Factors; Socioeconomic Factors; Cost of Illness; Family Health; Sickness Impact Profile; Preschool; Adaptation; Psychological; Caregivers/psychology; Parents/psychology; Psychological; Stress; social support; Taiwan; disabled children; Muscular Dystrophy; Duchenne/economics/physiopathology
Creator
An entity primarily responsible for making the resource
Chen JY; Clark MJ
Description
An account of the resource
This article investigates the relationships of child- and family-related variables with family function in families with children who have Duchenne muscular dystrophy. Child-related variables included level of disability (indicator: Barthel Index) and age at diagnosis. Family-related variables included caregiver health status (indicator: Duke Health Profile), family income and employment, family support (indicator: Family APGAR), family hardiness (indicator: Family Hardiness Index), and family functioning (indicator: Family Assessment Device). Family function displayed a significant correlation with age at diagnosis, but not with disability level. It was also significantly correlated with family hardiness, caregiver health status, and levels of family support, but not with income or employment variables. These findings highlight the need to assist families to cope with the presence of serious illness in their children.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.FCH.0000290542.10458.f8" target="_blank" rel="noreferrer">10.1097/01.FCH.0000290542.10458.f8</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
2007
Adaptation
Adult
Age Factors
Backlog
Caregivers/psychology
Chen JY
Child
Clark MJ
Cost Of Illness
Cross-sectional Studies
Disabled Children
Duchenne/economics/physiopathology
Family & Community Health
Family Health
Family Relations
Female
Humans
Journal Article
Male
Middle Aged
Muscular Dystrophy
Parents/psychology
Preschool
Psychological
Questionnaires
Sickness Impact Profile
Social Support
Socioeconomic Factors
Stress
Taiwan
-
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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URL Address
<a href="http://doi.org/10.1136/adc.2007.118141" target="_blank" rel="noreferrer">http://doi.org/10.1136/adc.2007.118141</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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Update on the management of Duchenne muscular dystrophy
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Humans; Male; patient care team; Cardiomyopathy; Muscular Dystrophy; Physical Therapy Modalities; Respiration Disorders/etiology/therapy; Dilated/etiology/therapy; Duchenne/complications/diagnosis/genetics/therapy; Dystrophin/genetics; Gene Therapy/methods; Glucocorticoids/therapeutic use; Scoliosis/etiology/therapy
Creator
An entity primarily responsible for making the resource
Manzur AY; Kinali M; Muntoni F
Description
An account of the resource
Duchenne muscular dystrophy (DMD) is familiar to paediatricians as the most common childhood muscular dystrophy and leads to severe disability and early death in the late teenage years if untreated. Improvements in general care, glucocorticoid corticosteroid treatment, non-invasive ventilatory support, and cardiomyopathy and scoliosis management have significantly changed the course of DMD in treated individuals, so that survival into adulthood is now a realistic possibility for most patients. This has important implications for the medical and social sectors involved in the transition to adult medical services and the provision of suitable employment and social care. Multidisciplinary team working for optimal management of DMD-specific multisystem complications is essential, and collaboration in disease specific national clinical networks is recommended. Several curative therapeutic strategies including cell and gene therapy are being pursued but are still at an experimental stage.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/adc.2007.118141" target="_blank" rel="noreferrer">10.1136/adc.2007.118141</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2008
Archives of Disease in Childhood
Backlog
Cardiomyopathy
Dilated/etiology/therapy
Duchenne/complications/diagnosis/genetics/therapy
Dystrophin/genetics
Gene Therapy/methods
Glucocorticoids/therapeutic use
Humans
Journal Article
Kinali M
Male
Manzur AY
Muntoni F
Muscular Dystrophy
Patient Care Team
Physical Therapy Modalities
Respiration Disorders/etiology/therapy
Scoliosis/etiology/therapy
-
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/10.1177/0269216311419989" target="_blank" rel="noreferrer">http://doi.org/10.1177/0269216311419989</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 cohort study of children and young people with progressive neuromuscular disorders: clinical and demographic profiles and changing patterns of referral for 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
2012
Subject
The topic of the resource
Child; Female; Humans; Male; Cohort Studies; Prevalence; Disease Progression; Multivariate Analysis; Poverty Areas; adolescent; Preschool; infant; retrospective studies; Palliative Care/statistics & numerical data; Disease Specific; Great Britain/epidemiology; Muscular Dystrophy; Duchenne/epidemiology/mortality; Neuromuscular Diseases/epidemiology/mortality; Referral and Consultation/trends; Spinal Muscular Atrophies of Childhood/epidemiology/mortality
Creator
An entity primarily responsible for making the resource
Fraser LK; Childs AM; Miller M; Aldridge J; Manning S; McKinney PA; Parslow RC
Description
An account of the resource
BACKGROUND: Progressive neuromuscular disease in children is life limiting and these children and young people would benefit from palliative care services, but data are limited on the number and demography of these children. AIM: To describe the clinical and demographic profile of children referred to a Children's hospice in the UK with progressive neuromuscular disease. SETTING/PARTICIPANTS: All children and young people with progressive neuromuscular disorders referred to Martin House Children's Hospice between 1987 and 2010. DESIGN: Retrospective cohort study. RESULTS: 300 children with progressive neuromuscular disease were referred to the hospice. Seventy percent (210) of these children had Duchenne Muscular Dystrophy, 22% (67) had Spinal Muscular Atrophy (34 with Type I) and 8% had other neuromuscular diseases. Numbers of referrals have not significantly increased over the last 15 years, although an increasing number come from a South Asian background (from 4% to 32%) and a higher number of children have conditions other than Duchenne Muscular Dystrophy. A total of 55.3% (166) of all referrals came from areas of the highest deprivation. Survival patterns varied by diagnostic group, but ethnicity and deprivation were not associated with survival in these children. CONCLUSIONS: The profile of children with progressive neuromuscular conditions who were referred for palliative care has changed over the last 20 years, with a different spectrum of underlying diagnoses and a greater number from a South Asian background. The higher than expected proportion of children living in areas of high deprivation has been consistent over time.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216311419989" target="_blank" rel="noreferrer">10.1177/0269216311419989</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
Aldridge J
Backlog
Child
Childs AM
Cohort Studies
Disease Progression
Disease Specific
Duchenne/epidemiology/mortality
Female
Fraser LK
Great Britain/epidemiology
Humans
Infant
Journal Article
Male
Manning S
McKinney PA
Miller M
Multivariate Analysis
Muscular Dystrophy
Neuromuscular Diseases/epidemiology/mortality
Palliative Care/statistics & Numerical Data
Palliative Medicine
Parslow RC
Poverty Areas
Preschool
Prevalence
Referral and Consultation/trends
Retrospective Studies
Spinal Muscular Atrophies of Childhood/epidemiology/mortality