1
40
6
-
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
Special Edition #1 2022 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
Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1177/13674935211015561" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/13674935211015561</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
Parents’ advice to other parents of children with spinal muscular atrophy: Two nationwide follow-ups
Publisher
An entity responsible for making the resource available
Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
children; neuromuscular diseases; palliative care; parents; Spinal muscular atrophies of childhood
Creator
An entity primarily responsible for making the resource
Hjorth E; Kreicbergs U; Sejersen T; Werlauff U; Rahbek J; Lövgren M
Description
An account of the resource
Being a parent of a child with spinal muscular atrophy (SMA), a disease that causes progressive muscle weakness, involves a range of challenges. The purpose of this study was to explore what advice parents of children with severe SMA, in absence of effective therapies, would like to give to other parents. This study derives from two nationwide parental surveys in Sweden and Denmark, where content analysis was used to analyse one open-ended question about parents’ advice to other parents. Ninety-five parents (parents of children diagnosed with SMA type 1 or 2, for whom respiratory support was considered during first year of life) participated (response rate: 84%). Of these 95 parents, 81 gave written advice to other parents. Advice covered coping with everyday life with the ill child, existential issues of living with and losing a child with SMA and involvement in care of the child. Parents highlighted leading normal lives insofar as possible, for example, trying to see healthy aspects in their child, not only focusing on care and treatment. Shared advice can be related to resilience strategies to parents, which can help healthcare professionals and others to support parents in similar situations.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/13674935211015561" target="_blank" rel="noreferrer noopener">10.1177/13674935211015561</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).
2021
2022 Special Edition 1 - Parent Perspectives
Children
Hjorth E
Journal Of Child Health Care
Kreicbergs U
Lövgren M
Neuromuscular Diseases
Palliative Care
Parents
Rahbek J
Sejersen T
Spinal Muscular Atrophies of Childhood
Werlauff U
-
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/10.1177/0300060516674608" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0300060516674608</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
Reliability of home-based, motor function measure in hereditary neuromuscular diseases
Publisher
An entity responsible for making the resource available
The Journal of International Medical Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
tone and motor problems; neuromuscular diseases; functional scales; motor skills; reliability; tool development; scale development; motor function measure; MFM
Creator
An entity primarily responsible for making the resource
Ruiz-Cortes X; Ortiz-Corredor F; Mendoza-Pulido C
Description
An account of the resource
Objective To evaluate the reliability of the motor function measure (MFM) scale in the assessment of disease severity and progression when administered at home and clinic and assess its correlation with the Paediatric Outcomes Data Collection Instrument (PODCI). Methods In this prospective study, two assessors rated children with hereditary neuromuscular diseases (HNMDs) using the MFM at the clinic and then 2 weeks later at the patients' home. Intraclass correlation coefficient (ICC) was calculated for the reliability of the MFM and its domains. The reliability of each item was assessed and the correlation between MFM and three domains of PODCI was evaluated. Results A total of 48 children (5-17 years of age) were assessed in both locations and the MFM scale demonstrated excellent inter-rater reliability (ICC, 0.98). Weighted kappa ranged from excellent to poor. Correlation of the home-based MFM with the PODCI domain 'basic mobility and transfers' was excellent, with the 'upper extremity' domain was moderate, but there was no correlation with the 'happiness' domain. Conclusion The MFM is a reliable tool for assessing patients with HNMD when used in a home-based setting.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0300060516674608" target="_blank" rel="noreferrer noopener">10.1177/0300060516674608</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
functional scales
Mendoza-Pulido C
MFM
motor function measure
Motor Skills
Neuromuscular Diseases
Ortiz-Corredor F
Reliability
Ruiz-Cortes X
scale development
The Journal of International Medical Research
tone and motor problems
tool development
-
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/10.1016/j.nmd.2014.01.003" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.nmd.2014.01.003</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
Hammersmith Functional Motor Scale and Motor Function Measure-20 in non ambulant SMA patients
Publisher
An entity responsible for making the resource available
Neuromuscular Disorders
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
responsiveness; Neurosciences & Neurology; Spinal muscular atrophy; trial; spinal muscular-atrophy; validation; neuromuscular diseases; Outcome measures; walk test; tone and motor problems; SMA1; tool development; scale development; HMFS; MFM
Creator
An entity primarily responsible for making the resource
Mazzone E; De Sanctis R; Fanelli L; Bianco F; Main M; van den Hauwe M; Ash M; de Vries R; Mata J F; Schaefer K; D'Amico A; Colia G; Palermo C; Scoto M; Mayhew A; Eagle M; Servais L; Vigo M; Febrer A; Korinthenberg R; Jeukens M; de Viesser M; Totoescu A; Voit T; Bushby K; Muntoni F; Goemans N; Bertini E; Pane M; Mercuri E
Description
An account of the resource
The aim of this prospective longitudinal multi centric study was to evaluate the correlation between the Hammersmith Functional Motor Scale and the 20 item version of the Motor Function Measure in non ambulant SMA children and adults at baseline and over a 12 month period. Seventy-four non-ambulant patients performed both measures at baseline and 49 also had an assessment 12 month later. At baseline the scores ranged between 0 and 40 on the Hammersmith Motor function Scale and between 3 and 45 on the Motor Function Measure 20. The correlation between the two scales was 0.733. The 12 month changes ranged between 11 and 4 for the Hammersmith and between 11 and 7 for the Motor Function Measure 20. The correlation between changes was 0.48. Our results suggest that both scales provide useful information although they appeared to work differently at the two extremes of the spectrum of abilities. The Hammersmith Motor Function Scale appeared to be more suitable in strong non ambulant patients, while the Motor Function Measures appeared to be more sensitive to capture activities and possible changes in the very weak patients, including more items capturing axial and upper limb activities. The choice of these measures in clinical trials should therefore depend on inclusion criteria and magnitude of expected changes. (C) 2014 Published by Elsevier B.V.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.nmd.2014.01.003" target="_blank" rel="noreferrer noopener">10.1016/j.nmd.2014.01.003</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2014
Ash M
Bertini E
Bianco F
Bushby K
Colia G
D'Amico A
De Sanctis R
de Viesser M
de Vries R
Eagle M
Fanelli L
Febrer A
Goemans N
HMFS
Jeukens M
Korinthenberg R
Main M
Mata J F
Mayhew A
Mazzone E
Mercuri E
MFM
Muntoni F
Neuromuscular Diseases
Neuromuscular Disorders
Neurosciences & Neurology
Outcome measures
Palermo C
Pane M
responsiveness
scale development
Schaefer K
Scoto M
Servais L
SMA1
Spinal Muscular Atrophy
spinal muscular-atrophy
tone and motor problems
tool development
Totoescu A
trial
VALIDATION
van den Hauwe M
Vigo M
Voit T
walk test
-
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/10.1016/j.apmr.2013.04.001" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.apmr.2013.04.001</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
Motor Function Measure: Validation of a Short Form for Young Children With Neuromuscular Diseases
Publisher
An entity responsible for making the resource available
Archives of Physical Medicine and Rehabilitation
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
reliability; Rehabilitation; scale; spinal muscular-atrophy; ambulation; Disability evaluation; dystrophy; Neuromuscular diseases; outcome measure; sma-iii patients; Sport Sciences; SMA1; tool development; scale development
Creator
An entity primarily responsible for making the resource
de Lattre C; Payan C; Vuillerot C; Rippert P; de Castro D; Berard C; Poirot I;MFM Study Group
Description
An account of the resource
Objective: To validate a useful version of the Motor Function Measure (MFM) in children with neuromuscular diseases aged <7 years old. Design: Two prospective cohort studies that documented the MFM completion of children aged between 2 and 7 years old. Setting: French-speaking rehabilitation departments from France, Belgium, and Switzerland. Participants: Healthy children (n=194) and children with a neuromuscular disease (n=88). Interventions: Patients were rated by the MFM either once or twice by trained medical professionals, with a delay between the 2 MFMs ranging between 8 and 30 days. Main Outcome Measure: Intra- and interrater reliability of the MFM. Results: The subtests making up the MFM-32, a scale monitoring severity and progression of motor function in patients with a neuromuscular disease in 3 functional domains, were carried out in healthy children aged 2 to 7 years. Twenty items of the MFM-32 were successfully completed by these children and were used to constitute the MFM-20. Principal component analysis of the MFM-20 confirmed the 3 functional domains. Inter- and intrarater reliability of the 3 subscores and total score were high (intraclass correlation coefficient >.90), and discriminant validity was good. Conclusions: The MFM-20 can be used as an outcome measure for assessment of motor function in young children with neuromuscular disease. (C) 2013 by the American Congress of Rehabilitation Medicine
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.apmr.2013.04.001" target="_blank" rel="noreferrer noopener">10.1016/j.apmr.2013.04.001</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).
2013
ambulation
Archives Of Physical Medicine And Rehabilitation
Berard C
de Castro D
de Lattre C
Disability Evaluation
dystrophy
MFM Study Group
Neuromuscular Diseases
outcome measure
Payan C
Poirot I
Rehabilitation
Reliability
Rippert P
Scale
scale development
sma-iii patients
SMA1
spinal muscular-atrophy
Sport Sciences
tool development
Vuillerot C
-
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 2019 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 2019 List
URL Address
<a href="http://doi.org/10.1371/journal.pone.0210574" target="_blank" rel="noreferrer noopener">http://doi.org/10.1371/journal.pone.0210574</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
Trends in incidence, prevalence, and mortality of neuromuscular disease in Ontario, Canada: a population-based retrospective cohort study (2003-2014)
Publisher
An entity responsible for making the resource available
PLoS ONE
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
children; adolescent; adult; article; child; cohort analysis; female; human; major clinical study; male; palliative therapy; retrospective study; controlled study; palliative care; school child; Ontario; aged; health insurance; infant; young adult; age; America; amyotrophic lateral sclerosis; amyotrophic lateral sclerosis/ep [Epidemiology]; animals; APEC countries; Canada; childhood disease/ep [Epidemiology]; childhood diseases; Chordata; cohort studies; Commonwealth of Nations; data base; death rate; Developed Countries; disease course; disease prevalence; disease progression; eukaryotes; health care; Hominidae; Homo; human diseases; incidence; International Classification of Diseases; mammals; man; middle aged; mortality; mortality rates; muscles; neuromuscular disease/ep [Epidemiology]; neuromuscular diseases; neuromuscular disorders; North America; OECD Countries; planning; population research; preschool child; prevalence; primates; retrospective studies; sclerosis; spinal muscular atrophy/ep [Epidemiology]; spine; survival; trend study; trends; vertebrates
Creator
An entity primarily responsible for making the resource
Rose L; McKim D; Leasa D; Nonoyama M; Tandon A; Bai Y; Amin R; Katz S; Goldstein R; Gershon A
Description
An account of the resource
Background: Population trends of disease prevalence and incidence over time measure burden of disease and inform healthcare planning. Neuromuscular disorders (NMD) affect muscle and nerve function with varying degrees of severity and disease progression. Objective: Using health administrative databases we described trends in incidence, prevalence, and mortality of adults and children with NMD. We also explored place of death and use of palliative care. Methods: Population-based (Ontario, Canada) cohort study (2003 to 2014) of adults and children with NMD identified using International Classification of Disease and health insurance billing codes within administrative health databases. Results: Adult disease prevalence increased on average per year by 8% (95% confidence interval (CI) 6% to 10%, P<.001), with the largest increase in adults 18-39 years. Childhood disease prevalence increased by 10% (95% CI 8% to 11%, P<.0001) per year, with the largest increase in children 0 to 5 years. Prevalence increased across all diagnoses except amyotrophic lateral sclerosis and spinal muscular atrophy for adults and all diagnoses for children. Adult incidence decreased by 3% (95% CI -4% to -2%, P<.0001) but incidence remained stable in children. Death occurred in 34,336 (18.5%) adults; 21,236 (61.8%) of whom received palliative care. Death occurred in 1,009 (5.6%) children; 507 (50.2%) of whom received palliative care. Mortality decreased over time in adults (odds ratio (OR) 0.86, 95% CI 0.86-0.87, P<.0001) and children (OR 0.79, 95% CI 0.76-0.82, P<.0001). Use of palliative care over time increased for adults (OR 1.18, 95% CI 1.09 to 1.28, P <.0001) and children (OR 1.22, 95% CI 1.20 to 1.23, P <.0001). Conclusions: In both adults and children, NMD prevalence is rising and mortality rates are declining. In adults incidence is decreasing while in children it remains stable. This confirms on a population-based level the increased survival of children and adults with NMD.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1371/journal.pone.0210574" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0210574</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).
2019
Adolescent
Adult
Age
Aged
America
Amin R
amyotrophic lateral sclerosis
amyotrophic lateral sclerosis/ep [Epidemiology]
Animals
APEC countries
Article
August 2019 List
Bai Y
Canada
Child
childhood disease/ep [Epidemiology]
childhood diseases
Children
Chordata
Cohort Analysis
Cohort Studies
Commonwealth of Nations
Controlled Study
Data Base
death rate
Developed Countries
Disease Course
disease prevalence
Disease Progression
Eukaryotes
Female
Gershon A
Goldstein R
Health Care
health Insurance
Hominidae
Homo
Human
Human Diseases
Incidence
Infant
International Classification of Diseases
Katz S
Leasa D
Major Clinical Study
Male
Mammals
Man
McKim D
Middle Aged
Mortality
mortality rates
muscles
neuromuscular disease/ep [Epidemiology]
Neuromuscular Diseases
Neuromuscular Disorders
Nonoyama M
North America
OECD Countries
Ontario
Palliative Care
Palliative Therapy
planning
PLoS One
Population Research
Preschool Child
Prevalence
Primates
Retrospective Studies
Retrospective Study
Rose L
School Child
sclerosis
spinal muscular atrophy/ep [Epidemiology]
Spine
Survival
Tandon A
trend study
Trends
Vertebrates
Young Adult
-
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
April 2018 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
April 2018 List
URL Address
<a href="http://doi.org/10.1016/j.nmd.2016.11.011" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.nmd.2016.11.011</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
Advance care discussions with young people affected by life-limiting neuromuscular diseases: A systematic literature review and narrative synthesis
Publisher
An entity responsible for making the resource available
Neuromuscular Disorders
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
terminal care; Neuromuscular Diseases; Terminal Care
Creator
An entity primarily responsible for making the resource
Hiscock A; Kuhn I; Barclay S
Description
An account of the resource
End of life care policy in the UK advocates open discussions between health professionals and patients as the end of life approaches. Despite well documented understanding of the progression of life-limiting neuromuscular diseases, the majority of patients affected by such conditions die without a formal end of life plan in place. We performed a systematic review to investigate conversations regarding end of life care between healthcare professionals and younger adult patients with life-limiting neuromuscular diseases. The search strategy included terms that focused on death and dying along with other factors that could impact length of life. The review found a very limited body of literature regarding end of life care conversations between young people affected by neuromuscular diseases and health professionals. The views and preferences of patients themselves have not been investigated. There is a shared reluctance of patients, family carers and healthcare professionals to initiate end of life care discussions. There are many factors that need to be investigated further in order to develop a consensus that would allow healthcare professionals to engage patients in end of life care conversations allowing them to face the end of their lives with appropriate plans in place.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.nmd.2016.11.011" target="_blank" rel="noreferrer noopener">10.1016/j.nmd.2016.11.011</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
April 2018 List
Barclay S
Hiscock A
Kuhn I
Neuromuscular Diseases
Neuromuscular Disorders
Terminal Care