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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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April 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
April 2020 List
URL Address
<a href="http://doi.org/10.3399/bjgp20X708233" target="_blank" rel="noreferrer noopener">http://doi.org/10.3399/bjgp20X708233</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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GPs' role in caring for children and young people with life-limiting conditions: a retrospective cohort study
Publisher
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The British journal of general practice : the journal of the Royal College of General Practitioners.
Date
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2020
Subject
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accident; adult; article; attention; care behavior; child; clinical article; clinical practice; cohort analysis; consultation; England; female; general practice; health care utilization; hospital patient; human; Icd-10; male; patient care; primary health care; Read code; retrospective study; secondary health care
Creator
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Jarvis S; Parslow R C; Hewitt C; Mitchell S; Fraser L K
Description
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Background GPs are rarely actively involved in healthcare provision for children and young people (CYP) with life-limiting conditions (LLCs). This raises problems when these children develop minor illness or require management of other chronic diseases. Aim To investigate the association between GP attendance patterns and hospital urgent and emergency care use. Design and setting Retrospective cohort study using a primary care data source (Clinical Practice Research Datalink) in England. The cohort numbered 19 888. Method CYP aged 0–25 years with an LLC were identified using Read codes (primary care) or International Classification of Diseases 10 th Revision (ICD-10) codes (secondary care). Emergency inpatient admissions and accident and emergency (A&E) attendances were separately analysed using multivariable, two-level random intercept negative binomial models with key variables of consistency and regularity of GP attendances. Results Face-to-face GP surgery consultations reduced, from a mean of 7.12 per person year in 2000 to 4.43 in 2015. Those consulting the GP less regularly had 15% (95% confidence interval [CI] = 10% to 20%) more emergency admissions and 5% more A&E visits (95% CI = 1% to 10%) than those with more regular consultations. CYP who had greater consistency of GP seen had 10% (95% CI = 6% to 14%) fewer A&E attendances but no significant difference in emergency inpatient admissions than those with lower consistency. Conclusion There is an association between GP attendance patterns and use of urgent secondary care for CYP with LLCs, with less regular GP attendance associated with higher urgent secondary healthcare use. This is an important area for further investigation and warrants the attention of policymakers and GPs, as the number of CYP with LLCs living in the community rises.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3399/bjgp20X708233" target="_blank" rel="noreferrer noopener">10.3399/bjgp20X708233</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
accident
Adult
April 2020 List
Article
Attention
care behavior
Child
Clinical Article
Clinical Practice
Cohort Analysis
Consultation
England
Female
Fraser L K
general practice
Health Care Utilization
Hewitt C
Hospital Patient
Human
Icd-10
Jarvis S
Male
Mitchell S
Parslow R C
Patient Care
Primary Health Care
Read code
Retrospective Study
secondary health care
The British journal of general practice : the journal of the Royal College of General Practitioners.
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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
April 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
April 2020 List
URL Address
<a href="http://doi.org/10.1183/13993003.congress-2019.PA639" target="_blank" rel="noreferrer noopener">http://doi.org/10.1183/13993003.congress-2019.PA639</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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Paediatric long-term home ventilation: Should we rethink social inclusion for these children?
Publisher
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European Respiratory Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adolescent; artificial ventilation; assisted ventilation; attention; child; conference abstract; female; human; major clinical study; male; medical record review; neuromuscular disease; noninvasive ventilation; palliative therapy; retrospective study; school child; school dropout; secondary health care; social exclusion; social needs; tracheostomy
Creator
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Benedetti F; Agosto C; Divisic A; Rusalen F; Moro N; Pellizzon M; Ometto M; Grigolon E; Lazzarin P; Benini F
Description
An account of the resource
Background: over the last 30 yrs, many studies have investigated long-term ventilatory support (LTVS), focusing primary on medical issues. Few researches have focused on social burden for families with a child in need of LTVS. Objectives: aim of the study was to analyze the social needs of children and families living with home LTVS and highlights signs of social exclusion. Methods: retrospective medical records review of children on home LTVS, followed by our Regional Paediatric Palliative Care Network. According to Wallis and Jardine we defined paediatric LTVS as “any child below the age of 17 who is medically stable and requires a mechanical aid for breathing either invasively by tracheostomy or by non-invasive mask interface for all, or part of the day.” We extended the age to 23 yrs. The following data were adopted as signs of social exclusion: absence of secondary care-giver (meaning the child must be with the same person throughout the day), abandon of work by a parent, no chance for family holiday, school dropout. Results: among 87 patients, 33 cases are ventilated invasively and 54 with Non-invasive Ventilation. Median age is 9,5 yrs; 52% of the children are affected by a neuromuscular disease, 21% being permanently enticed. Thirty-seven (42,5%) children don’t have a secondary care-giver, in 41 families one parent abandoned work and 12 children experienced school dropout. Conclusions: Children and families living with home LTVS have special needs not only in the medical field but also in the social one. Our data confirm that these children are at high risk for exclusion from the society and suggest more attention on these aspects which represent significant challenge for clinicians.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1183/13993003.congress-2019.PA639" target="_blank" rel="noreferrer noopener">10.1183/13993003.congress-2019.PA639</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
Agosto C
April 2020 List
Artificial Ventilation
assisted ventilation
Attention
Benedetti F
Benini F
Child
conference abstract
Divisic A
European Respiratory Journal
Female
Grigolon E
Human
Lazzarin P
Major Clinical Study
Male
Medical Record Review
Moro N
Neuromuscular Disease
Noninvasive Ventilation
Ometto M
Palliative Therapy
Pellizzon M
Retrospective Study
Rusalen F
School Child
school dropout
secondary health care
social exclusion
social needs
Tracheostomy
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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
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/10.1136/archdischild-2019-rcpch.457" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2019-rcpch.457</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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End of life care in children with neurodisability and concurrent palliative care needs: An audit of local Paediatric palliative services
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
child; female; human; male; palliative therapy; awareness; clinical article; terminal care; pain; school child; conference abstract; decision making; monitoring; Canavan disease; cerebral palsy; disorders of mitochondrial functions; documentation; medical specialist; nutrition; Rett syndrome; secondary health care; seizure; social care; spinal muscular atrophy
Creator
An entity primarily responsible for making the resource
Hqli F; Santhanam G
Description
An account of the resource
Aims A proportion of children with neurodisability will have life-limiting conditions, whereby their complex continuing needs increase the intricacy and urgency for providing comprehensive supportive care to these families. Equal access to universal and specialist paediatric palliative care (PPC) services should therefore be available depending on the child's needs. In our local borough there is a distinct group of children with complex neurodisabilities requiring input from hospital and community paediatricians, and the specialist PPC team. This audit aims to assess whether the current palliative care provided to these children is meeting the standards set by NICE guidance (2016). Methods Approval was granted by the Clinical Effectiveness Unit and audit lead locally. Standards set by NICE guidance (NG61) were used, with a target compliance of 100%. Eleven children were identified to have a neurodisability with ongoing PPC input. Primary and secondary care health records were used for collection of data, which was subsequently analysed on a password-protected spreadsheet. Results There were nine males and two females, with a mean age of 10.44 years. Underlying diagnoses include cerebral palsy (n=4); leukodystrophy (n=2); spinal muscular atrophy, movement disorder, Canavan syndrome, mitochondrial disease, and Rett syndrome (n=1 each). All children were enterally fed. Four areas of interest within the NICE guidance were identified for data collection: care planning and support, Advance Care Plan (ACP), symptom management, and input from the PPC team. Results showed that symptoms, growth and nutrition, and social care needs were addressed in all children (100%). 82% were reviewed by the PPC team in the past year; 88% had their medications adjusted accordingly when appropriate; and 91% had an ACP in place. Conclusions This audit demonstrated parents' and carers' involvement in the decision-making process for the child and their awareness of the child's life-limiting condition; adequate management of symptoms, monitoring of growth and nutrition; and the presence of an ACP in most children. Identified areas for development include having a named medical specialist for each child; regular review of the ACP by the PPC team; and clear documentation of seizure management in the child's ACP, and the stepwise management of pain.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2019-rcpch.457" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2019-rcpch.457</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
Archives of Disease in Childhood
August 2019 List
Awareness
Canavan disease
Cerebral Palsy
Child
Clinical Article
conference abstract
Decision Making
disorders of mitochondrial functions
Documentation
Female
Hqli F
Human
Male
Medical Specialist
Monitoring
Nutrition
Pain
Palliative Therapy
Rett syndrome
Santhanam G
School Child
secondary health care
Seizure
Social Care
Spinal Muscular Atrophy
Terminal Care