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
2023 Special Edition 5 - Low Resource Setting 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
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1007/s00467-022-05525-1" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00467-022-05525-1</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
Clinical and genetic characteristics of Tunisian children with infantile nephropathic cystinosis
Publisher
An entity responsible for making the resource available
Pediatric Nephrology
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Child; child; article; controlled study; female; human; male; retrospective study; palliative therapy; preschool child; clinical article; information processing; Only Child; gene mutation; gene; infant; pediatric patient; clinical feature; Fanconi renotubular syndrome; gene deletion; heterozygosity; homozygosity; molecular fingerprinting; prenatal diagnosis; cystinosis/di [Diagnosis]; cystinosis/dt [Drug Therapy]; genetic trait; infantile nephropathic cystinosis/di [Diagnosis]; infantile nephropathic cystinosis/dt [Drug Therapy]; kidney disease/di [Diagnosis]; kidney disease/dt [Drug Therapy]; Tunisian; bicarbonate/dt [Drug Therapy]; bicarbonate/pv [Special Situation for Pharmacovigilance]; calcitriol/dt [Drug Therapy]; calcitriol/pv [Special Situation for Pharmacovigilance]; citrate potassium/dt [Drug Therapy]; citrate potassium/pv [Special Situation for Pharmacovigilance]; CTNS gene; cystine/ec [Endogenous Compound]; exon; founder mutation; genetic analysis; hypothyroidism/dt [Drug Therapy]; mercaptamine/dt [Drug Therapy]; mercaptamine/pv [Special Situation for Pharmacovigilance]; molecular diagnosis; RNA splicing; Sanger sequencing; thyroid hormone/dt [Drug Therapy]; thyroid hormone/pv [Special Situation for Pharmacovigilance]
Creator
An entity primarily responsible for making the resource
El Younsi M; Trabelsi M; Ben Youssef S; Ouertani I; Hammi Y; Achour A; Maazoul F; Kharrat M; Gargah T; M'Rad R
Description
An account of the resource
Background: Nephropathic cystinosis is an autosomal recessive disease caused by a mutation in the CTNS gene which encodes cystinosin, a lysosomal cystine transporter. The spectrum of mutations in the CTNS gene is not well defined in the North African population. Here, we investigated twelve patients with nephropathic cystinosis belonging to eight Tunisian families in order to analyze the clinical and genetic characteristics of Tunisian children with infantile nephropathic cystinosis. Methods: Clinical data were collected retrospectively. Molecular analysis of the CTNS gene was performed by Sanger sequencing. Results: We describe a new splicing mutation c.971-1G > C in the homozygous state in 6/12 patients which seems to be a founder mutation. The reported deletion of 23nt c.771_793 Del (p.Gly258Serfs*30) was detected in a homozygous state in one patient and in a heterozygous compound state with the c.971-1G > C mutation in 3/12 patients. Two of 12 patients have a deletion of exons 4 and 5 of the CTNS gene. None of our patients had the most common 57-kb deletion. Conclusions: The mutational spectrum in the Tunisian population is different from previously described populations. Thus, a molecular diagnostic strategy must be implemented in Tunisia, by targeting as a priority the common mutations described in this country. Such a strategy will allow a cost-effective diagnosis confirmation as well as early administration of treatment with oral cysteamine. A higher resolution version of the Graphical abstract is available as Supplementary information.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00467-022-05525-1" target="_blank" rel="noreferrer noopener">10.1007/s00467-022-05525-1</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).
2023
2023 SE5 - Low Resource Setting
Achour A
Article
Ben Youssef S
bicarbonate/dt [Drug Therapy]
bicarbonate/pv [Special Situation for Pharmacovigilance]
calcitriol/dt [Drug Therapy]
calcitriol/pv [Special Situation for Pharmacovigilance]
Child
citrate potassium/dt [Drug Therapy]
citrate potassium/pv [Special Situation for Pharmacovigilance]
Clinical Article
Clinical Feature
Controlled Study
CTNS gene
cystine/ec [Endogenous Compound]
cystinosis/di [Diagnosis]
cystinosis/dt [Drug Therapy]
El Younsi M
exon
Fanconi renotubular syndrome
Female
founder mutation
Gargah T
gene
Gene Deletion
gene mutation
genetic analysis
genetic trait
Hammi Y
heterozygosity
homozygosity
Human
hypothyroidism/dt [Drug Therapy]
Infant
infantile nephropathic cystinosis/di [Diagnosis]
infantile nephropathic cystinosis/dt [Drug Therapy]
Information Processing
Kharrat M
kidney disease/di [Diagnosis]
kidney disease/dt [Drug Therapy]
M'Rad R
Maazoul F
Male
mercaptamine/dt [Drug Therapy]
mercaptamine/pv [Special Situation for Pharmacovigilance]
molecular diagnosis
molecular fingerprinting
Only Child
Ouertani I
Palliative Therapy
Pediatric Nephrology
pediatric patient
Prenatal Diagnosis
Preschool Child
Retrospective Study
RNA splicing
Sanger sequencing
thyroid hormone/dt [Drug Therapy]
thyroid hormone/pv [Special Situation for Pharmacovigilance]
Trabelsi M
Tunisian
-
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/10.1186/s13023-015-0379-6" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s13023-015-0379-6</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
A cross-sectional controlled developmental study of neuropsychological functions in patients with glutaric aciduria type i
Publisher
An entity responsible for making the resource available
Orphanet Journal of Rare Diseases
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
adolescent; cognition; cross sectional study; Dystonia; metabolic disorder; human; article; child; female; male; controlled study; adult; clinical article; dystonia/di [Diagnosis]; Barry Albright Dystonia Scale; cognitive development; Cognitive development; continuous performance test; enzyme deficiency; glutaric aciduria type I; Glutaric aciduria type I; Information processing; motor dysfunction; motor performance; neurologic disease assessment; newborn screening; response time; visual memory; visuomotor coordination; working memory; tone and motor problems; Glutaric acidemia type I; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Boy N; Heringer J; Haege G; Glahn E M; Hoffmann G F; Garbade S F; Kolker S; Burgard P
Description
An account of the resource
Background: Glutaric aciduria type I (GA-I) is an inherited metabolic disease due to deficiency of glutaryl-CoA dehydrogenase (GCDH). Cognitive functions are generally thought to be spared, but have not yet been studied in detail. Methods: Thirty patients detected by newborn screening (n = 13), high-risk screening (n = 3) or targeted metabolic testing (n = 14) were studied for simple reaction time (SRT), continuous performance (CP), visual working memory (VWM), visual-motor coordination (Tracking) and visual search (VS). Dystonia (n = 13 patients) was categorized using the Barry-Albright-Dystonia Scale (BADS). Patients were compared with 196 healthy controls. Developmental functions of cognitive performances were analysed using a negative exponential function model. Results: BADS scores correlated with speed tests but not with tests measuring stability or higher cognitive functions without time constraints. Developmental functions of GA-I patients significantly differed from controls for SRT and VS but not for VWM and showed obvious trends for CP and Tracking. Dystonic patients were slower in SRT and CP but reached their asymptote of performance similar to asymptomatic patients and controls in all tests. Asymptomatic patients did not differ from controls, except showing significantly better results in Tracking and a trend for slower reactions in visual search. Data across all age groups of patients and controls fitted well to a model of negative exponential development. Conclusions: Dystonic patients predominantly showed motor speed impairment, whereas performance improved with higher cognitive load. Patients without motor symptoms did not differ from controls. Developmental functions of cognitive performances were similar in patients and controls. Performance in tests with higher cognitive demand might be preserved in GA-I, even in patients with striatal degeneration. Copyright © 2015 Boy et al.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s13023-015-0379-6" target="_blank" rel="noreferrer noopener">10.1186/s13023-015-0379-6</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).
2015
Adolescent
Adult
Article
Barry Albright Dystonia Scale
Boy N
Burgard P
characteristics
Child
Clinical Article
Cognition
cognitive development
continuous performance test
Controlled Study
Cross Sectional Study
Dystonia
dystonia/di [Diagnosis]
enzyme deficiency
Female
Garbade S F
Glahn E M
Glutaric acidemia type I
glutaric aciduria type I
Haege G
Heringer J
Hoffmann G F
Human
Information Processing
Kolker S
Male
Metabolic Disorder
motor dysfunction
motor performance
neurologic disease assessment
newborn screening
Orphanet Journal Of Rare Diseases
response time
tone and motor problems
Trajectory
visual memory
visuomotor coordination
working memory
-
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/NCC.0000000000000146" target="_blank" rel="noreferrer">http://doi.org/10.1097/NCC.0000000000000146</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
Facebook Advertisements Recruit Parents of Children With Cancer for an Online Survey of Web-Based Research Preferences
Publisher
An entity responsible for making the resource available
Cancer Nursing
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; Male; Income; adolescent; Human; oncology; Diseases; Sample Size; Population; Article; Child; Caregiver; advertizing; cancer research; Caregiver; childhood cancer; Human; Internet; neoplasm; parent; social media; social network; cancer palliative therapy; cancer patient; cancer recurrence; click; computer; Facebook; health survey; information processing; interpersonal communication; legal guardian; major clinical study; mobile phone; nurse; Only Child; Palliative therapy; parent; parental attitude; participant recruitment; Patient; priority journal; school child; social media; Video Recording; Video Recording
Creator
An entity primarily responsible for making the resource
Akard TF; Wray S; Gilmer Mary Jo
Description
An account of the resource
BACKGROUND:: Studies involving samples of children with life-threatening illnesses and their families face significant challenges, including inadequate sample sizes and limited diversity. Social media recruitment and Web-based research methods may help address such challenges yet have not been explored in pediatric cancer populations. OBJECTIVE:: This study examined the feasibility of using Facebook advertisements to recruit parent caregivers of children and teenagers with cancer. We also explored the feasibility of Web-based video recording in pediatric palliative care populations by surveying parents of children with cancer regarding (a) their preferences for research methods and (b) technological capabilities of their computers and phones. METHODS:: Facebook's paid advertising program was used to recruit parent caregivers of children currently living with cancer to complete an electronic survey about research preferences and technological capabilities. RESULTS:: The advertising campaign generated 3 897 981 impressions, which resulted in 1050 clicks at a total cost of $1129.88. Of 284 screened individuals, 106 were eligible. Forty-five caregivers of children with cancer completed the entire electronic survey. Parents preferred and had technological capabilities for Web-based and electronic research methods. Participant survey responses are reported. CONCLUSION:: Facebook was a useful, cost-effective method to recruit a diverse sample of parent caregivers of children with cancer. Web-based video recording and data collection may be feasible and desirable in samples of children with cancer and their families. IMPLICATIONS FOR PRACTICE:: Web-based methods (eg, Facebook, Skype) may enhance communication and access between nurses and pediatric oncology patients and their families.
2014-06
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/NCC.0000000000000146" target="_blank" rel="noreferrer">10.1097/NCC.0000000000000146</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
2014
Adolescent
advertizing
Akard TF
Article
Backlog
Cancer Nursing
Cancer Palliative Therapy
Cancer Patient
Cancer Recurrence
Cancer Research
Caregiver
Child
Childhood Cancer
click
computer
Diseases
Facebook
Female
Gilmer Mary Jo
Health Survey
Human
Income
Information Processing
Internet
Interpersonal Communication
Journal Article
legal guardian
Major Clinical Study
Male
mobile phone
Neoplasm
Nurse
Oncology
Only Child
Palliative Therapy
Parent
Parental Attitude
participant recruitment
Patient
Population
Priority Journal
Sample Size
School Child
social media
social network
Video Recording
Wray 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
September 2017 List
Notes
<p>Using Smart Source Parsing ( (pp Date of Publication: 01 Sep 2015</p>
URL Address
<a href="https://doi.org/10.1177/1367493513510630">https://doi.org/10.1177/136749351351063</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
'Why Does It Happen Like This?' Consulting With Users and Providers Prior to an Evaluation of Services for Children with Life Limiting Conditions and their Families
Publisher
An entity responsible for making the resource available
Journal Of Child Health Care : For Professionals Working With Children In The Hospital And Community
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Family; Patient Referral; Rehabilitation; Supply And Distribution; Adolescent; Child; Child Health Care; Handicapped Child; Health Service; Health Services Research; Human; Information Processing; Interview
Creator
An entity primarily responsible for making the resource
Hunt A; Brown E; Coad J; Staniszewska S; Hacking S; Chesworth B; Chambers L
Description
An account of the resource
Children with life limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. We consulted with children, young people, their parents and local professionals to gain a more informed picture of issues affecting them prior to preparing a bid to evaluate services in the area. Multiple methods included focus groups, face-to-face and telephone interviews and participatory activities. Recordings and products from activities were analysed for content to identify areas of relevance and concern. An overarching theme from parents was 'Why does it happen like this?' Services did not seem designed to meet their needs. Whilst children and young people expressed ideas related to quality of environment, services and social life, professionals focused on ways of meeting the families' needs. The theme that linked families' concerns with those of professionals was 'assessing individual needs'. Two questions to be addressed by the evaluation are (1) to what extent are services designed to meet the needs of children and families and (2) to what extent are children, young people and their families consulted about what they need? Consultations with families and service providers encouraged us to continue their involvement as partners in the evaluation.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1177/136749351351063">10.1177/1367493513510630</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).
2015
Adolescent
Brown E
Chambers L
Chesworth B
Child
Child Health Care
Coad J
Family
Hacking S
Handicapped Child
Health Service
Health Services Research
Human
Hunt A
Information Processing
Interview
Journal of child health care : for professionals working with children in the hospital and community
Patient Referral
Rehabilitation
September 2017 List
Staniszewska S
Supply And Distribution
-
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
September 2017 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2017-313087.515" target="_blank" rel="noreferrer">http://doi.org/10.1136/archdischild-2017-313087.515</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
Problematic Symptoms In Children Attending For Short Breaks At A Children's Hospice; Are We Missing An Opportunity For Symptom Assessment And Management?
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
2017
Subject
The topic of the resource
Female; Hospice; Male; Symptom Assessment; Child; Clinical Article; Clinical Nurse Specialist; Diagnosis; Family Study; Health Care Delivery; Human; Information Processing; Irritability; Nursing; Pain Assessment; Pediatrician; School Child; Seizure; Sleep
Creator
An entity primarily responsible for making the resource
Balfe J M; Booth A; Ritchie B
Description
An account of the resource
Aim Symptom assessment is a core component of paediatric palliative care. This audit aimed to determine whether the symptoms of children attending for routine short breaks in a children's hospice were assessed. The development of a formal symptom assessment team is also described. Methods The admission notes of all children attending for respite over a 2 week period in Feb 2016 were examined and data collected on Excel. The data was pulled from Vitro an online data system used within the hospice to record all nursing, medical and multi-disciplinary notes and all contacts with the family and professionals. Information gathered included diagnoses and ACT category, problematic symptoms and the use of formal symptom assessment tools. Results A total of 22 children attended for respite over the first 2 weeks of February 2016. The average age was 7 years 2 months with a range of 1 year 11 months to 17 years. A broad range of conditions were included, the majority were from ACT category 4. As described in previous studies of children with life-limiting conditions there was a high burden of problematic symptoms among the children. 16/22 children were noted to have at least 1 symptom on the routine respite admission paperwork and nursing notes identified ongoing symptoms during the short break in 12 of the 24 children. 7/22 had respiratory symptoms, 2/22 had problematic seizures. Irritability and pain were noted in 2/22 and 3/22 respectively. 3/22 children were recorded as having poor sleep. Disappointedly although symptoms were recognised, symptom management action was only taken in 5 cases. No formal recognised symptom management tool was used. Of note the FLACC pain scale has been incorporated into the hospice paperless chart but was not used in any case. Outcome The results of the initial audit highlighted the need to change service delivery and a new symptom assessment service incorporating a clinical nurse specialist and paediatrician with support from the broader clinical team has been developed. To date 14 children have received support from the symptom assessment team and a reaudit of routine short breaks in ongoing.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2017-313087.515" target="_blank" rel="noreferrer">10.1136/archdischild-2017-313087.515</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
Archives of Disease in Childhood
Balfe J M
Booth A
Child
Clinical Article
Clinical Nurse Specialist
Diagnosis
Family Study
Female
Health Care Delivery
Hospice
Human
Information Processing
Irritability
Male
Nursing
Pain Assessment
Pediatrician
Ritchie B
School Child
Seizure
September 2017 List
Sleep
Symptom Assessment
-
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
May 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
Integrating Palliative Care Into School Communities
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Palliative Therapy; Bereavement; Child; Controlled Study; Curriculum; Hospice; Hospices; Human; Human Experiment; Information Processing; Interview; Model; Only Child; Palliative Care; Primary School; School Child; Scotland; Skill; Staff; Terminal Care
Creator
An entity primarily responsible for making the resource
Paul S; Cree V; Murray S
Description
An account of the resource
Background: Historically, the social aspects of death, dying and bereavement have been given insufficient attention by palliative care services; this has had an adverse effect on how patients and their families experience end-of-life and bereavement. New approaches to palliative care, which forefront palliative care as a public health issue, have brought impetus to this aspect of service provision by seeking to develop communities that support death, dying and bereavement. A survey found that most hospices in the UK regard this approach as a priority and work with schools has been identified as a key area of innovation within this. Practice that engages schools and children on issues concerning end-of-life care is, however, under-developed and under-documented, and there is little evidence that explores the role of hospices in working with schools. Aim: To extend the work of a hospice to engage with local primary schools to promote education and support around end-of-life and bereavement experiences. Method: An action research methodology was used to explore the potential of hospices working with school communities. The research was conducted in one hospice and across two primary schools in Scotland. Participants included children, aged nine to twelve, parents and school and hospice staff, who participated in a series of interviews and focus groups to identify better practice and engage in change processes. Results: Seven innovations were identified and piloted that were of relevance to the school curriculum and the relationship between hospices, school communities and wider society. A model for integrated practice between hospices and schools is suggested. Conclusions: This research informs the ways that hospices might improve their community engagement activities to enable school communities to develop relevant skills, attitudes and support around end-of-life and bereavement experiences for their children. This requires an extension of normal hospice services to develop capacity within school communities.
Identifier
An unambiguous reference to the resource within a given context
https://doi.org/10.1177/0269216316631462
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
Bereavement
Child
Controlled Study
Cree V
Curriculum
Hospice
Hospices
Human
Human Experiment
Information Processing
Interview
May 2017 List
Model
Murray S
Only Child
Palliative Care
Palliative Medicine
Palliative Therapy
Paul S
Primary School
School Child
Scotland
Skill
Staff
Terminal Care