1
40
43
-
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 2024 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 List 2024
URL Address
<a href="http://doi.org/10.1111/apa.16981" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/apa.16981</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
Finnish children who needed long-term home respiratory support had severe sleep-disordered breathing and complex medical backgrounds
Publisher
An entity responsible for making the resource available
Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
The topic of the resource
Child; child; article; cohort analysis; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; treatment duration; anxiety; comorbidity; Sleep Disorders; tracheostomy; long term care; follow up; Only Child; home care; university hospital; clinical feature; clinical outcome; psychological aspect; central nervous system disease; disease severity; apnea hypopnea index; adolescent; polysomnography; adenotonsillectomy; Down syndrome; infant; onset age; brain tumor; demographics; multidisciplinary team; data analysis software; developmental delay; tonsillectomy; neuromuscular disease; pneumonia; respiratory distress syndrome; craniofacial surgery; asthma; acute respiratory failure; beta adrenergic receptor blocking agent/pv [Special Situation for Pharmacovigilance]; montelukast/pv [Special Situation for Pharmacovigilance]; developmental disorder; aspiration pneumonia/co [Complication]; childhood obesity; continuous positive airway pressure; Finn (citizen); invasive ventilation; noninvasive positive pressure ventilation; sleep apnea syndromes/th [Therapy]; adenoid hypertrophy; angiotensin receptor antagonist/pv [Special Situation for Pharmacovigilance]; automatic positive airway pressure; beta 2 adrenergic receptor stimulating agent/ih [Inhalational Drug Administration]; beta 2 adrenergic receptor stimulating agent/pv [Special Situation for Pharmacovigilance]; brain hypoxia; cardiovascular agent/pv [Special Situation for Pharmacovigilance]; central sleep apnea syndrome/th [Therapy]; choana atresia/su [Surgery]; corticosteroid/ih [Inhalational Drug Administration]; corticosteroid/pv [Special Situation for Pharmacovigilance]; craniofacial malformation; cranioplasty; diaphragm hernia; dipeptidyl carboxypeptidase inhibitor/pv [Special Situation for Pharmacovigilance]; hypoventilation/th [Therapy]; ICD-10; laryngomalacia; Le Fort III osteotomy; lung hypoplasia; mask/am [Adverse Device Effect]; maxilla hypoplasia/co [Complication]; medical device complication/co [Complication]; nasal mask; nose obstruction/co [Complication]; obstructive sleep apnea/th [Therapy]; orthodontic procedure; respiratory care; skin irritation/co [Complication]; Sleep Apnea Syndromes; sleep disorder/co [Complication]; SPSS version 28.00; steroid/pv [Special Situation for Pharmacovigilance]; tonsillotomy
Creator
An entity primarily responsible for making the resource
Jarvela M; Katila M; Eskola V; Makinen R; Mandelin P; Saarenpaa-Heikkila O; Lauhkonen E
Description
An account of the resource
Aim: No studies have described long-term paediatric home respiratory support in Nordic countries. We examined the clinical characteristics and long-term outcomes of paediatric patients who received continuous positive airway pressure, non-invasive-positive-pressure ventilation and invasive ventilation from a multidisciplinary home respiratory support team. Methods: Retrospective tertiary-level data were collected between 1 January 2010 and 31 December 2020 in Tampere University Hospital. These comprised patient demographics, treatment course and polysomnography-confirmed sleep-disordered breathing (SDB). Results: There were 93 patients (63.4% boys). The median age at treatment initiation was 8.4 (range 0.11-16.9) years. The patients had: neuromuscular disease (16.1%), central nervous system disease (14.0%), developmental disabilities and congenital syndrome (29.0%), lung-airway conditions (11.8%), craniofacial syndrome (15.1%) and severe obesity (14.0%). More than two-thirds had severe SDB (66.7%) and the most common one was obstructive sleep apnoea in 66.7%. We found that 92.5% received long-term therapy for more than 3 months and the mean treatment duration was 3.3 ± 2.7 years. A non-invasive mask interface was used in 94.7% of cases and 5.3% needed tracheostomy ventilation. More than a quarter (26.7%) achieved disease resolution during the study period. Conclusion: Most children who needed long-term home respiratory support had complex conditions and severe, persistent SDB.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/apa.16981" target="_blank" rel="noreferrer noopener">10.1111/apa.16981</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).
2024
Acta Paediatrica
acute respiratory failure
adenoid hypertrophy
adenotonsillectomy
Adolescent
angiotensin receptor antagonist/pv [Special Situation for Pharmacovigilance]
anxiety
apnea hypopnea index
April List 2024
Article
aspiration pneumonia/co [Complication]
Asthma
automatic positive airway pressure
beta 2 adrenergic receptor stimulating agent/ih [Inhalational Drug Administration]
beta 2 adrenergic receptor stimulating agent/pv [Special Situation for Pharmacovigilance]
beta adrenergic receptor blocking agent/pv [Special Situation for Pharmacovigilance]
brain hypoxia
Brain Tumor
cardiovascular agent/pv [Special Situation for Pharmacovigilance]
central nervous system disease
central sleep apnea syndrome/th [Therapy]
Child
childhood obesity
choana atresia/su [Surgery]
Clinical Feature
Clinical Outcome
Cohort Analysis
Comorbidity
Continuous Positive Airway Pressure
Controlled Study
corticosteroid/ih [Inhalational Drug Administration]
corticosteroid/pv [Special Situation for Pharmacovigilance]
craniofacial malformation
craniofacial surgery
cranioplasty
Data Analysis Software
Demographics
Developmental delay
developmental disorder
diaphragm hernia
dipeptidyl carboxypeptidase inhibitor/pv [Special Situation for Pharmacovigilance]
Disease Severity
Down Syndrome
Eskola V
Female
Finn (citizen)
Follow Up
Home Care
Human
hypoventilation/th [Therapy]
Icd-10
Infant
invasive ventilation
Jarvela M
Katila M
laryngomalacia
Lauhkonen E
Le Fort III osteotomy
Long Term Care
lung hypoplasia
Major Clinical Study
Makinen R
Male
Mandelin P
mask/am [Adverse Device Effect]
maxilla hypoplasia/co [Complication]
medical device complication/co [Complication]
montelukast/pv [Special Situation for Pharmacovigilance]
Multidisciplinary team
nasal mask
Neuromuscular Disease
noninvasive positive pressure ventilation
nose obstruction/co [Complication]
obstructive sleep apnea/th [Therapy]
Only Child
onset age
orthodontic procedure
Palliative Therapy
Pneumonia
Polysomnography
psychological aspect
respiratory care
Respiratory Distress Syndrome
Retrospective Study
Saarenpaa-Heikkila O
skin irritation/co [Complication]
Sleep Apnea Syndromes
Sleep Apnea Syndromes/th [Therapy]
sleep disorder/co [Complication]
Sleep Disorders
SPSS version 28.00
steroid/pv [Special Situation for Pharmacovigilance]
Tonsillectomy
tonsillotomy
Tracheostomy
treatment duration
University Hospital
-
Dublin Core
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Title
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February 2024 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
February List 2024
URL Address
<a href="http://doi.org/10.1089/jpm.2023.0292" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2023.0292</a>
Dublin Core
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Title
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Implementation of an Innovative Palliative Care Screening Tool in the Pediatric Intensive Care Unit: A Pilot Study
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
2023
Subject
The topic of the resource
child; article; controlled study; female; human; major clinical study; male; chronic disease; palliative therapy; comorbidity; pilot study; pediatric intensive care unit; congenital malformation; intensive care; prospective study; tertiary health care
Creator
An entity primarily responsible for making the resource
Hodge CH; Kerris EW; Freeman MC; Eckman ST; Deeter DM; Even KM
Description
An account of the resource
Background: Pediatric palliative care (PPC) can improve the quality of care provided to critically ill children with a high risk of morbidity and mortality. Early identification of patients admitted to the pediatric intensive care unit (PICU) who may benefit from PPC involvement is essential. Objectives: To create a brief screening tool, the Pediatric Intensive Care-Pediatric Palliative Care Screen, identifying PICU patients most likely to benefit from PPC involvement and to assess if weekly screening with this screening tool increases the number of PPC consults placed in the PICU. Methods: This is a prospective investigational single-center study in a 24-bed PICU at a U.S. tertiary care children's hospital. Weekly screening was completed by two clinicians for a six-month period between April and October 2022. Results: A total of 162 screens were completed on 124 individual patients; 47 screens were positive (29%), and 115 were negative (71%). Fourteen new PPC consults were placed from the PICU with one PPC consult for every 36.7 compared with one PPC for every 41.4 admissions the previous year. Of the positive screens, 68% had two or more comorbidities at the time of PICU admission versus 26% of negative screens (p < 0.001). Technology dependence (57% vs. 5%, p < 0.001) and presence of congenital defects (26% vs. 10%, p = 0.013) were significantly more common among positive screens. Conclusions: Weekly screening with a short, 7-question screening tool can identify PICU patients most likely to benefit from a PPC consult. Patients with chronic illnesses and baseline comorbidities are most likely to screen positive.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2023.0292" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0292</a>
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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
Article
Child
Chronic Disease
Comorbidity
Congenital Malformation
Controlled Study
Deeter DM
Eckman ST
Even KM
February List 2024
Female
Freeman MC
Hodge CH
Human
Intensive Care
Journal of Palliative Medicine
Kerris EW
Major Clinical Study
Male
Palliative Therapy
Pediatric Intensive Care Unit
Pilot Study
Prospective Study
tertiary health care
-
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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August 2023 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 List 2023
URL Address
<a href="http://doi.org/10.1097/PCC.0000000000002228" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/PCC.0000000000002228</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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Children With Complex Chronic Conditions: A Multifaceted Contemporary Medical Challenge Not Restricted to PICUs
Publisher
An entity responsible for making the resource available
Pediatric Critical Care 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; child; human; palliative therapy; Only Child; comorbidity; editorial; chronic disease
Creator
An entity primarily responsible for making the resource
Piva J; Fontela P
Description
An account of the resource
Widespread primary care policies coupled with the advent of tertiary and quaternary care facilities promoted an impressive reduction of pediatric mortality in the last 50 years worldwide. The better care provided to survivors led to a significant increase in the number of pediatric patients with special medical needs. The 2009–2010 National Survey of Children with Special Health Care Needs estimated that 15.1% (11.2 million children) of U.S. children have some kind of medical dependency and that 23% of households with children include at least one child with a special healthcare need (1). Importantly, pediatric patients with special medical needs present wide variation in terms of their medical complexity, functional limitations, and resource need (2,3). [...]
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/PCC.0000000000002228" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000002228</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
August List 2044
Child
Chronic Disease
Comorbidity
Editorial
Fontela P
Human
Only Child
Palliative Therapy
Pediatric Critical Care Medicine
Piva J
-
Dublin Core
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Title
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2021 Special Edition 1 - Low Resource Settings
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
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.1111/tmi.13529" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/tmi.13529</a>
Dublin Core
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Title
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Coronavirus Disease-19 Deaths among Children and Adolescents in an Area of Northeast, Brazil: Why So Many?
Publisher
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Tropical Medicine and International Health
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; Adolescent; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Comorbidity; Children; Intensive Care Units; Age Distribution; Adolescents; Hospitalization/statistics & numerical data; Brazil/epidemiology; Mortality; deaths; Covid-19; mortality; Deaths; adolescents; children; covid-19; COVID-19/mortality
Creator
An entity primarily responsible for making the resource
de Siqueira ALA; Cristina FVS; Lima SPR; Santana SV; Cristina FLD; Eduardo CL; Queiroz GR
Description
An account of the resource
OBJECTIVE: To describe COVID-19 deaths among children and adolescents in Sergipe, Brazil. METHODS: Ecological study of all COVID-19 reported cases and deaths occurring in children and adolescents <19 years of age in Sergipe reported by the health surveillance and mortality information systems of Sergipe's Health Secretary and hospital records. RESULTS: 37 deaths of children <19 years old were reported up to 30(th) September 2020, corresponding to 4.87 deaths for 100,000 population <19 years old. Most deaths occurred among infants (44.1/100,000), and this age group had the highest case fatality rate (15.3 %). Most children had comorbidities such as chronic neurological diseases (n=7; 19%) and prematurity (n=4; 11%). Most children who died (n=18; 49%) were not admitted to intensive care units (ICU). CONCLUSION: COVID-19 mortality in children and adolescents in Sergipe was higher than in other Brazilian states and in high-income countries. A large proportion of the deaths occurred among children with co-morbidities and a minority of children were admitted to ICU, reflecting the limited provision of such beds in the State. Newborns and infants are a high-risk group that must have priority in health public policy.
Identifier
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<a href="http://doi.org/10.1111/tmi.13529" target="_blank" rel="noreferrer noopener">10.1111/tmi.13529</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
2021 Special Edition 1 - Low Resource Settings
Adolescent
Adolescents
Age Distribution
Brazil/epidemiology
Child
Child Preschool
Children
Comorbidity
COVID-19
COVID-19/mortality
Cristina FLD
Cristina FVS
de Siqueira ALA
deaths
Eduardo CL
Female
Hospitalization/statistics & numerical data
Humans
Infant
Infant Newborn
Intensive Care Units
Lima SPR
Male
Mortality
Queiroz GR
Santana SV
Tropical Medicine & International Health
-
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
November 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
November 2022 List
URL Address
<a href="http://doi.org/10.1186/s13023-022-02500-9" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s13023-022-02500-9</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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Effectiveness of Time-Limited Eye Movement Desensitization Reprocessing Therapy for Parents of Children with a Rare Life-Limiting Illness: A Randomized Clinical Trial
Publisher
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Orphanet Journal of Rare Diseases
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Eye Movement Desensitization Reprocessing/methods; Stress Disorders Post-Traumatic/diagnosis/psychology/therapy; Child; Comorbidity; Emdr; Humans; Life-limiting illness; Parents; PTSD; Trauma; Treatment Outcome; Waiting Lists
Creator
An entity primarily responsible for making the resource
Conijn T; De Roos C; Vreugdenhil HJI; Van Dijk-Lokkart EM; Wijburg FA; Haverman L
Description
An account of the resource
BACKGROUND: Parents of children with a rare progressive life-limiting illness are at risk for parental posttraumatic stress disorder (PTSD). Studies on the treatment of parental PTSD with eye movement and desensitization reprocessing (EMDR) therapy in pediatric practice are lacking. Therefore this study aims to evaluate the feasibility and effectiveness of time-limited EMDR therapy in reducing PTSD symptoms, comorbid psychological symptoms, distress, and parental stress. METHODS: Mono-center randomized clinical trial conducted between February 2020 and April 2021. Fourteen parents (N = 7 mothers, N = 7 fathers) of mucopolysaccharidosis type III patients reporting PTSD symptoms on a (sub)clinical level were assigned to EMDR or a wait-list control condition followed by EMDR. Four sessions of EMDR (each 90 min) divided over two half-days were offered. Measurements were conducted at baseline, post-treatment/post-waitlist, and 3-months post-treatment. The primary outcome was PTSD symptom severity (PTSD Check List for DSM-5). Secondary outcomes included comorbid psychological symptoms (Brief Symptom Inventory), distress (Distress Thermometer for Parents) and parenting stress (Parenting Stress Questionnaire). Between-group comparisons pre-to-post treatment (N = 7 EMDR vs. N = 7 wait-list) and within-group comparisons (EMDR, N = 14) from pre-to-post treatment and from pre-treatment to 3-months follow-up were carried out per intent-to-treat linear mixed model analyses. RESULTS: Compared to wait-list, EMDR resulted in a significant reduction on total PTSD symptom severity (d = 1.78) and on comorbid psychological symptoms, distress and parenting stress (d = .63-1.83). Within-group comparisons showed a significant effect on all outcomes at post-treatment (d = 1.04-2.21) and at 3-months follow-up (d = .96-2.30) compared to baseline. EMDR was well-tolerated, associated with a low drop-out rate, a high therapy adherence and no adverse events. CONCLUSION: Time-limited EMDR reduces PTSD symptoms, psychological comorbidity, distress and parenting stress in parents of children with a rare progressive life-limiting illness. This treatment was feasible for these overburdened parents. Recurrent monitoring of PTSD symptoms, and, if needed, offering this time-limited type of trauma treatment should be introduced in everyday pediatric practice. Trial registration Netherlands Trial Register, NL8496. Registered 01-04-2020, https://trialsearch.who.int/Trial2.aspx?TrialID=NL8496 .
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s13023-022-02500-9" target="_blank" rel="noreferrer noopener">10.1186/s13023-022-02500-9</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).
Child
Parents
2022
Comorbidity
Conijn T
De Roos C
Emdr
Eye Movement Desensitization Reprocessing/methods
Haverman L
Humans
life-limiting illness
November 2022 List
Orphanet Journal Of Rare Diseases
PTSD
Stress Disorders Post-Traumatic/diagnosis/psychology/therapy
Trauma
Treatment Outcome
Van Dijk-Lokkart EM
Vreugdenhil HJI
Waiting Lists
Wijburg FA
-
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
September 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
September 2022 List
URL Address
<a href="http://doi.org/10.1111/dmcn.15184" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/dmcn.15184</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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Advance Care Plan Discussion among Parents of Children with Cerebral Palsy
Publisher
An entity responsible for making the resource available
Developmental Medicine and Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Child; Comorbidity; Terminal care; Cerebral palsy; Advance care plan; School
Creator
An entity primarily responsible for making the resource
Khalid F; Ng Voon SI; Ong L C; Lim WK; Li L; Adnan A; Ganesan V; Teh C M; Fong CY
Description
An account of the resource
Aim: To evaluate parental perception of advance care plan (ACP) discussions in families of Malaysian children with bilateral cerebral palsy (CP) classified in Gross Motor Function Classification System levels IV or V for (1) acceptance of the ACP discussion, (2) feedback on the usefulness of ACP discussion, and (3) exploration of possible factors related to parental acceptance of ACP. Method: This was a prospective pre- and post-ACP discussion questionnaire study for parents of children with bilateral CP. Results: Sixty-nine patients were recruited to the study; 64 (93%) had at least one additional comorbidity. The median age was 8 years (interquartile range 5 years 1 month-11 years 6 months). Fifty-seven (82.6%) parents found the ACP discussion acceptable, and most reported positive feedback on various components of the discussion (88.4-97.1%). One-third of participants were not comfortable discussing end-of-life care plans. On multivariate analysis, parents who were comfortable discussing end-of-life care plans were more likely to find the ACP discussion acceptable (odds ratio 27.78, 95% confidence interval 2.9-265.1, p = 0.004). Interpretation: Most parents of Malaysian children with bilateral CP reported the ACP discussion as both acceptable and beneficial. Parents need to be comfortable about discussing end-of-life care plans for their child to enable the ACP discussion to be an acceptable experience.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/dmcn.15184" target="_blank" rel="noreferrer noopener">10.1111/dmcn.15184</a>
Rights
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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).
2022
Adnan A
advance care plan
Cerebral Palsy
Child
Comorbidity
Developmental Medicine and Child Neurology
Fong CY
Ganesan V
Khalid F
Li L
Lim WK
Ng Voon SI
Ong L C
School
September 2022 List
Teh C M
Terminal Care
-
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 2021 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 2021 List
URL Address
<a href="http://doi.org/10.1007/s00431-020-03801-6" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00431-020-03801-6</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
COVID-19 Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection in children and adolescents: a systematic review of critically unwell children and the association with underlying comorbidities
Publisher
An entity responsible for making the resource available
European Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Paediatric; Adolescent; Child; Comorbidity; Humans; Risk Factors; Severity of Illness Index; Prognosis; Critical Illness; Covid-19; Global Health; Comorbidities; Critically unwell; Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2); COVID-19/diagnosis/epidemiology
Creator
An entity primarily responsible for making the resource
Williams N; Radia T; Harman K; Agrawal P; Cook J; Gupta A
Description
An account of the resource
Data show that children are less severely affected with SARS-Covid-19 than adults; however, there have been a small proportion of children who have been critically unwell. In this systematic review, we aimed to identify and describe which underlying comorbidities may be associated with severe SARS-CoV-2 disease and death. The study protocol was in keeping with Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines. A total of 1726 articles were identified of which 28 studies fulfilled the inclusion criteria. The 28 studies included 5686 participants with confirmed SARS-CoV-2 infection ranging from mild to severe disease. We focused on the 108 patients who suffered from severe/critical illness requiring ventilation, which included 17 deaths. Of the 108 children who were ventilated, the medical history was available for 48 patients. Thirty-six of the 48 patients (75%) had documented comorbidities of which 11/48 (23%) had pre-existing cardiac disease. Of the 17 patients who died, the past medical history was reported in 12 cases. Of those, 8/12 (75%) had comorbidities.Conclusion: Whilst only a small number of children suffer from COVID-19 disease compared to adults, children with comorbidities, particularly pre-existing cardiac conditions, represent a large proportion of those that became critically unwell. What is Known: • Children are less severely affected by SARS-CoV-2 than adults. • There are reports of children becoming critically unwell with SARS-CoV-2 and requiring intensive care. What is New: • The majority of children who required ventilation for SARS-CoV-2 infection had underlying comorbidities. • The commonest category of comorbidity in these patients was underlying cardiac disease.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00431-020-03801-6" target="_blank" rel="noreferrer noopener">10.1007/s00431-020-03801-6</a>
Rights
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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
Adolescent
Agrawal P
April 2021 List
Child
Comorbidities
Comorbidity
Cook J
COVID-19
COVID-19/diagnosis/epidemiology
Critical Illness
Critically unwell
European Journal of Pediatrics
Global Health
Gupta A
Harman K
Humans
Paediatric
Prognosis
Radia T
Risk Factors
Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2)
Severity Of Illness Index
Williams N
-
Dublin Core
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Title
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March 2021 List
Text
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March 2021 List
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2020.29082" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamanetworkopen.2020.29082</a>
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Title
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Parent-Reported Symptoms and Medications Used Among Children With Severe Neurological Impairment
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JAMA Network Open
Date
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2020
Subject
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Infant; Child; Comorbidity; Female; Male; Child Preschool; Adolescence; Data Analysis Software; Human; Confidence Intervals; Descriptive Statistics; Record Review; Health Resource Utilization; Cross Sectional Studies; Funding Source; Scales; Severity of Illness; Central Nervous System Agents -- Therapeutic Use; Nervous System Diseases -- Epidemiology -- In Adolescence; Nervous System Diseases -- Epidemiology -- In Infancy and Childhood; Nervous System Diseases -- Symptoms; Peripheral Nervous System Agents -- Therapeutic Use; Polypharmacy
Creator
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Feinstein JA; Feudtner C; Blackmer AB; Valuck RJ; Fairclough DL; Holstein J; Gregoire LA; Samay S; Kempe A
Description
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Key Points: Question: In children with severe neurological impairment (SNI) who cannot self-report, can comprehensive parent-reported symptom assessments inform medication use? Findings: In this cross-sectional study of 100 children with SNI and polypharmacy, parents reported that children experienced multiple concurrent high-distress symptoms, notably irritability (65.0%), insomnia (55.0%), and pain (54.0%). Although higher symptom burdens were associated with increasing polypharmacy, opportunities existed to optimize pharmacotherapy; for example, among 54.0% of children with pain, only 61.0% were prescribed an analgesic. Meaning: Comprehensive parent-reported symptom data paired with medication data could help clinicians identify targets for personalized symptom management, including underrecognized or undertreated symptoms. This cross-sectional study examines whether higher global symptom scores are associated with use of more medications and assesses associations between specific symptoms and medications among children with severe neurological impairment. Importance: Children with severe neurological impairment (SNI) often take multiple medications to treat problematic symptoms. However, for children who cannot self-report symptoms, no system exists to assess multiple symptoms and their association with medication use. Objectives: To assess the prevalence of 28 distinct symptoms, test whether higher global symptom scores (GSS) were associated with use of more medications, and assess the associations between specific symptoms and medications. Design, Setting, and Participants: This cross-sectional study was conducted between April 1, 2019, and December 31, 2019, using structured parent-reported symptom data paired with clinical and pharmacy data, at a single-center, large, hospital-based special health care needs clinic. Participants included children aged 1 to 18 years with SNI and 5 or more prescribed medications. Data analysis was performed from April to June 2020. Exposure: During routine clinical visits, parent-reported symptoms were collected using the validated 28-symptom Memorial Symptom Assessment Scale (MSAS) and merged with clinical and pharmacy data. Main Outcomes and Measures: Symptom prevalence, counts, and GSS (scored 0-100, with 100 being the worst) were calculated, and the association of GSS with medications was examined. To evaluate associations between symptom-medication pairs, the proportion of patients with a symptom who used a medication class or specific medication was calculated. Results: Of 100 patients, 55.0% were boys, the median (interquartile range [IQR]) age was 9 (5-12) years, 62.0% had 3 or more complex chronic conditions, 76.0% took 10 or more medications, and none were able to complete the MSAS themselves. Parents reported a median (IQR) of 7 (4-10) concurrent active symptoms. The median (IQR) GSS was 12.1 (5.4-20.8) (range, 0.0-41.2) and the GSS was 9.8 points (95% CI, 5.5-14.1 points) higher for those with worse recent health than usual. Irritability (65.0%), insomnia (55.0%), and pain (54.0%) were the most prevalent symptoms. Each 10-point GSS increase was associated with 12% (95% CI, 4%-19%) higher medication counts, adjusted for age and complex chronic condition count. Among the 54.0% of children with reported pain, 61.0% were prescribed an analgesic. Conclusions and Relevance: These findings suggest that children with SNI reportedly experience substantial symptom burdens and that higher symptom scores are associated with increased medication use. Paired symptom-medication data may help clinicians identify targets for personalized symptom management, including underrecognized or undertreated symptoms.
Identifier
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<a href="http://doi.org/10.1001/jamanetworkopen.2020.29082" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2020.29082</a>
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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
Adolescence
Blackmer AB
Central Nervous System Agents -- Therapeutic Use
Child
Child Preschool
Comorbidity
Confidence Intervals
Cross Sectional Studies
Data Analysis Software
Descriptive Statistics
Fairclough DL
Feinstein JA
Female
Feudtner C
Funding Source
Gregoire LA
Health Resource Utilization
Holstein J
Human
Infant
JAMA Network Open
Kempe A
Male
March 2021 List
Nervous System Diseases -- Epidemiology -- In Adolescence
Nervous System Diseases -- Epidemiology -- In Infancy and Childhood
Nervous System Diseases -- Symptoms
Peripheral Nervous System Agents -- Therapeutic Use
Polypharmacy
Record Review
Samay S
scales
Severity of Illness
Valuck RJ
-
Dublin Core
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Title
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September 2020 List
Text
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September 2020 List
URL Address
<a href="http://doi.org/10.1186/s12887-020-02253-z" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12887-020-02253-z</a>
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Comorbidity patterns and socioeconomic inequalities in children under 15 with medical complexity: a population-based study
Publisher
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BMC Pediatrics
Date
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2020
Subject
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Administrative data; Child; Comorbidity; Health inequalities; Latent class analysis; Medical complexity; Socioeconomic factors
Creator
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Carrilero N; Dalmau-Bueno A; García-Altés A
Description
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BACKGROUND: Children with medical complexity (CMC) denotes the profile of a child with diverse acute and chronic conditions, making intensive use of the healthcare services and with special health and social needs. Previous studies show that CMC are also affected by the socioeconomic position (SEP) of their family. The aim of this study is to describe the pathologic patterns of CMC and their socioeconomic inequalities in order to better manage their needs, plan healthcare services accordingly, and improve the care models in place. METHODS: Cross-sectional study with latent class analysis (LCA) of the CMC population under the age of 15 in Catalonia in 2016, using administrative data. LCA was used to define multimorbidity classes based on the presence/absence of 57 conditions. All individuals were assigned to a best-fit class. Each comorbidity class was described and its association with SEP tested. The Adjusted Morbidity Groups classification system (Catalan acronym GMA) was used to identify the CMC. The main outcome measures were SEP, GMA score, sex, and age distribution, in both populations (CMC and non-CMC) and in each of the classes identified. RESULTS: 71% of the CMC population had at least one parent with no employment or an annual income of less than €18,000. Four comorbidity classes were identified in the CMC: oncology (36.0%), neurodevelopment (13.7%), congenital and perinatal (19.8%), and respiratory (30.5%). SEP associations were: oncology OR 1.9 in boys and 2.0 in girls; neurodevelopment OR 2.3 in boys and 1.8 in girls; congenital and perinatal OR 1.7 in boys and 2.1 in girls; and respiratory OR 2.0 in boys and 2.0 in girls. CONCLUSIONS: Our findings show the existence of four different patterns of comorbidities in CMC and a significantly high proportion of lower SEP children in all classes. These results could benefit CMC management by creating more efficient multidisciplinary medical teams according to each comorbidity class and a holistic perspective taking into account its socioeconomic vulnerability.
Identifier
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<a href="http://doi.org/10.1186/s12887-020-02253-z" target="_blank" rel="noreferrer noopener">10.1186/s12887-020-02253-z</a>
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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
Administrative data
Bmc Pediatrics
Carrilero N
Child
Comorbidity
Dalmau-Bueno A
García-Altés A
Health inequalities
Latent Class Analysis
Medical Complexity
September 2020 List
Socioeconomic Factors
-
Dublin Core
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Title
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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/10.1002/ajmg.c.31497" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/ajmg.c.31497</a>
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Title
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Sleep disorders in Cornelia de Lange syndrome
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American Journal of Medical Genetics Part C - Seminars in Medical Genetics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
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adolescent; problem behavior; priority journal; gene mutation; intellectual impairment; human; article; child; female; male; controlled study; adult; clinical article; comorbidity; epilepsy; de Lange syndrome; sleep disorder; body mass; gastroesophageal reflux; gene; HDAC8 gene; histone deacetylase 8; NIPBL gene; RAD21 gene; SMC1A gene; SMC3 gene; sleep disturbance/disorders; trajectory; characteristics
Creator
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Zambrelli E;Fossati C;Turner K;Taiana M;Vignoli A;Gervasini C;Russo S;Furia F;Masciadri M;Ajmone P;Kullman G; Canevini M P; Selicorni A
Description
An account of the resource
Cornelia de Lange syndrome (CdLS) is a rare genetic disorder characterized by growth retardation, intellectual disability, limb defects, typical facial dysmorphism, and other systemic involvement. Sleep disturbances have been frequently reported in CdLS, but these have not been completely characterized, and prevalence data are conflicting. The aim of this paper is to characterize and determine the prevalence of sleep disorders in CdLS patients by means of a validated questionnaire. From November 2012 to November 2013, we asked 46 consecutive parents/caregivers of CdLS patients aged more than 3 years old to fill out the sleep disturbances scale for children (SDSC). The subjects were also characterized by the presence of epilepsy, intellectual disability (ID), behavioral problems, CdLS severity score, gastroesophageal reflux disease (GERD), and genetic test results. An abnormal total sleep score was found in 7 patients (15.2%), 26 (56.5%) showed a borderline total score, and 18 (39.1%) had an abnormal score for at least one SDSC factor. In our study sleep disorders were found to be positively associated to presence of epilepsy, GERD, ID, and behavioral disturbances. No correlation was evident with specific mutations of the different genes, BMI, and severity score. Our results confirm that sleep disorders represent a common problem in CdLS, with higher incidence than in the normal population. In these patients sleep disorders seem to be more prevalent in comorbid settings, representing a clinical indicator for different medical and neuropsychiatric disorders. Better knowledge and characterization of typology of sleep disorders in CdLS patients could permit a more specific therapeutic approach. © 2016 Wiley Periodicals, Inc.
Identifier
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<a href="http://doi.org/10.1002/ajmg.c.31497" target="_blank" rel="noreferrer noopener">10.1002/ajmg.c.31497</a>
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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
Adolescent
Adult
Ajmone P
American Journal of Medical Genetics Part C - Seminars in Medical Genetics
Article
body mass
Canevini M P
characteristics
Child
Clinical Article
Comorbidity
Controlled Study
De Lange syndrome
Epilepsy
Female
Fossati C
Furia F
Gastroesophageal Reflux
gene
gene mutation
Gervasini C
HDAC8 gene
histone deacetylase 8
Human
Intellectual Impairment
Kullman G
Male
Masciadri M
NIPBL gene
Priority Journal
problem behavior
RAD21 gene
Russo S
Selicorni A
sleep disorder
sleep disturbance/disorders
SMC1A gene
SMC3 gene
Taiana M
Trajectory
Turner K
Vignoli A
Zambrelli E
-
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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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/10.1177/0883073812450750" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0883073812450750</a>
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Fatigue and depression in children with demyelinating disorders
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Journal of Child Neurology
Date
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2013
Subject
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adolescent; Canada; epidemiology; child behavior; disease duration; priority journal; school child; health survey; self report; cohort analysis; cross-sectional study; psychological aspect; human; article; child; female; male; controlled study; clinical article; comorbidity; childhood disease; mood; sleep; therapy; acute disseminated encephalomyelitis; demyelinating disease; depression; fatigue; multiple sclerosis; acute disseminated encephalomyelitis; demyelinating disorders; multiple sclerosis; acquired demyelinating syndromes; trajectory; characteristics; alertness
Creator
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Parrish J B;Weinstock-Guttman B;Smerbeck A;Benedict R H B;Yeh E A
Description
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Fatigue and depression have been shown to be significant problems in children with multiple sclerosis. The rate at which these conditions occur in children with other acquired demyelinating syndromes is unknown. In this cross-sectional study, the authors evaluated 49 children with demyelinating disorders (multiple sclerosis and acute disseminated encephalomyelitis) and 92 healthy controls for depression and/or fatigue using the Behavior Assessment System for Children, Second Edition behavior and mood rating scale and Varni PedsQL Multidimensional Fatigue Scale. The parents of acquired demyelinating syndrome patients were more likely to report elevated depressive symptoms (30.8% vs 10.8%, P =.008). Elevated parent and self-reported total fatigue (25% vs 0%, P <.001, 26.7% vs 8.6%, P =.024) was seen in the patient cohort. The authors conclude that fatigue and depression are far more common in children with acquired demyelinating syndromes than in controls. Clinical attention to and implementation of effective therapies oriented toward these conditions in children with acquired demyelinating syndromes is needed. © The Author(s) 2012.
Identifier
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<a href="http://doi.org/10.1177/0883073812450750" target="_blank" rel="noreferrer noopener">10.1177/0883073812450750</a>
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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
acquired demyelinating syndromes
acute disseminated encephalomyelitis
Adolescent
alertness
Article
Benedict R H B
Canada
characteristics
Child
Child Behavior
Childhood Disease
Clinical Article
Cohort Analysis
Comorbidity
Controlled Study
Cross-sectional Study
demyelinating disease
demyelinating disorders
Depression
disease duration
Epidemiology
Fatigue
Female
Health Survey
Human
Journal of Child Neurology
Male
Mood
Multiple Sclerosis
Parrish J B
Priority Journal
psychological aspect
School Child
Self Report
Sleep
Smerbeck A
Therapy
Trajectory
Weinstock-Guttman B
Yeh E A
-
Dublin Core
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Title
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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.ijporl.2017.07.039" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ijporl.2017.07.039</a>
Dublin Core
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Title
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Pediatric leukodystrophies: The role of the otolaryngologist
Publisher
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International Journal of Pediatric Otorhinolaryngology
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; dysphagia; priority journal; cohort analysis; physician attitude; nose feeding; human; article; child; adult; clinical article; comorbidity; hearing impairment; anamnesis; physical examination; leukodystrophy/dt [Drug Therapy]; otolaryngologist; 1309378-01-5 (botulinum toxin A); 1638949-86-6 (botulinum toxin A); 1800016-51-6 (botulinum toxin A); 93384-43-1 (botulinum toxin A); aspiration pneumonia; botulinum toxin A/dt [Drug Therapy]; Drool; Quality of Life; Assessment; Questionnaire; head and neck disease; hypersalivation/su [Surgery]; leukodystrophy/dt [Drug Therapy]; quality of life assessment; stomach tube; breathing difficulties; feeding difficulties; sleep disturbance; Aicardi-Goutières syndrome; Krabbe disease; leukodystrophy; Pelizaeus-Merzbacher disease; x-linked adreno-leukodystrophy; trajectory; characteristics; drooling
Creator
An entity primarily responsible for making the resource
Kay-Rivest E; Khendek L; Bernard G; Daniel S J
Description
An account of the resource
Background Leukodystrophies consist of degenerative neurogenetic diseases often associated with comorbidities that extend beyond the neurological system. Despite their impacts on patients' quality of life and risks of complications, head and neck symptomology is poorly reported in the literature. The objective of this study was to identify and quantify the main head and neck complaints among a cohort of patients diagnosed with leukodystrophies and define the role of the otolaryngologist as part of a multidisciplinary team for treating these patients. Methods During the First Canadian National Conference on Leukodystrophies held at the Montreal's Children Hospital, a cohort of 12 patients diagnosed with leukodystrophies were recruited and evaluated by a multidisciplinary team. An otolaryngology-focused assessment was done through history and physical examination, and included a screening questionnaire for 23 common otolaryngology issues. If families reported a history of sialorrhea, a validated questionnaire (Drool Quality of Life Assessment Questionnaire (DroolQoL)) was subsequently distributed. Results from the questionnaires were then compiled and analyzed. Results Of the 12 recruited patients, 83% (10/12) were known to an otolaryngologist. Drooling affected 67% (8/12) of patients although only 37.5% (3/8) of patients had undergone medical or surgical therapies for this issue. Four patients experienced at least one aspiration pneumonia. 58% (7/12) of the patients had dysphagia, of whom 43% (3/12) were fed exclusively via gastrostomy tube and 28% (2/7) required thickening of feeds. Two patients, despite suspicion of dysphagia and aspiration, had never undergone evaluation. As for otologic issues, it was noted that 25% (3/12) of patients had a history of pressure equalizing tubes (PETs) and one patient had a history of hearing loss. Conclusion Head and neck comorbidities affect children with leukodystrophies. Therefore, the otolaryngologist should be part of the multidisciplinary team, specifically for the management of dysphagia and sialorrhea.
Identifier
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<a href="http://doi.org/10.1016/j.ijporl.2017.07.039" target="_blank" rel="noreferrer noopener">10.1016/j.ijporl.2017.07.039</a>
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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).
1309378-01-5 (botulinum toxin A)
1638949-86-6 (botulinum toxin A)
1800016-51-6 (botulinum toxin A)
2017
93384-43-1 (botulinum toxin A)
Adolescent
Adult
Aicardi-Goutières syndrome
anamnesis
Article
aspiration pneumonia
Assessment
Bernard G
botulinum toxin A/dt [Drug Therapy]
breathing difficulties
characteristics
Child
Clinical Article
Cohort Analysis
Comorbidity
Daniel S J
Drool
drooling
Dysphagia
feeding difficulties
head and neck disease
hearing impairment
Human
hypersalivation/su [Surgery]
International Journal of Pediatric Otorhinolaryngology
Kay-Rivest E
Khendek L
Krabbe disease
Leukodystrophy
leukodystrophy/dt [Drug Therapy]
nose feeding
otolaryngologist
Pelizaeus-Merzbacher disease
physical examination
Physician Attitude
Priority Journal
Quality Of Life
quality of life assessment
Questionnaire
sleep disturbance
stomach tube
Trajectory
x-linked adreno-leukodystrophy
-
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.jns.2006.05.054" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jns.2006.05.054</a>
Dublin Core
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Title
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Niemann-Pick C disease in Spain: clinical spectrum and development of a disability scale
Publisher
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Journal of the Neurological Sciences
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Adolescent; Adult; Age of Onset; Carrier Proteins/ge [Genetics]; Cerebellar Ataxia/di [Diagnosis]; Cerebellar Ataxia/ep [Epidemiology]; Cerebellar Diseases/di [Diagnosis]; Cerebellar Diseases/ep [Epidemiology]; Child; Preschool; Comorbidity; Disability; Evaluation; Dysarthria/di [Diagnosis]; Dysarthria/ep [Epidemiology]; Female; Genetic Predisposition to Disease/ge [Genetics]; Infant; feeding difficulties; sleep disturbance; tone and motor problems; NPC; tool development; scale development
Creator
An entity primarily responsible for making the resource
Iturriaga C; Pineda M; Fernandez-Valero E M; Vanier M T; Coll M J
Description
An account of the resource
OBJECTIVES: To describe the clinical evolution of Niemann-Pick C disease to identify possible factors involved in the diagnosis and severity of the disease. METHODS: A clinical database and a severity scale was created to evaluate 45 patients diagnosed with Niemann-Pick type C in the last 28 years in Spain. RESULTS: Complete clinical data were obtained from 30 patients, all were confirmed to have mutations in the NPC1 gene. Regarding clinical form, 3 were perinatal, 7 severe infantile, 6 late infantile, 11 juvenile and 3 adult. Biochemical phenotype was classic in 26. Splenomegaly was present in 28 patients (93%) with a wide range of age at detection. The first symptom of neurological disease was clumsiness, followed in 2-4 years by cerebellar signs. Ophthalmoplegia appeared 2-4 years later and became complete 1-2 years after onset. Dysarthria appeared by the time of complete ophthalmoplegia. Diagnosis was made before the onset of neurological signs in patients with the severe infantile form, at the time of onset of cerebellar signs in the late infantile form and complete ophthalmoplegia in late onset forms. CONCLUSIONS: In our series, splenomegaly is present in 96% of patients, even in late onset forms during the first years of life. Clumsiness in children with otherwise normal motor development precedes the onset of ataxia by 2-4 years in Niemann Pick type C. A disability scale could be useful for monitoring evolution, establishing possible phenotypic correlations and evaluating future therapies.
Identifier
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<a href="http://doi.org/10.1016/j.jns.2006.05.054" target="_blank" rel="noreferrer noopener">10.1016/j.jns.2006.05.054</a>
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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).
2006
Adolescent
Adult
Age of Onset
Carrier Proteins/ge [Genetics]
cerebellar ataxia/di [Diagnosis]
Cerebellar Ataxia/ep [Epidemiology]
Cerebellar Diseases/di [Diagnosis]
Cerebellar Diseases/ep [Epidemiology]
Child
Coll M J
Comorbidity
Disability
Dysarthria/di [Diagnosis]
Dysarthria/ep [Epidemiology]
Evaluation
feeding difficulties
Female
Fernandez-Valero E M
Genetic Predisposition to Disease/ge [Genetics]
Infant
Iturriaga C
Journal Of The Neurological Sciences
NPC
Pineda M
Preschool
scale development
sleep disturbance
tone and motor problems
tool development
Vanier M T
-
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/j.1365-2788.2008.01047.x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/j.1365-2788.2008.01047.x</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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Health and sleep problems in Cornelia de Lange Syndrome: a case control study
Publisher
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Journal of Intellectual Disability Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Male; Severity of Illness Index; Case-Control Studies; Comorbidity; Surveys and Questionnaires; Humans; Adolescent; Prevalence; Female; Health Status; De Lange Syndrome/epidemiology/psychology; Ear Diseases/epidemiology/psychology; Eye Diseases/epidemiology/psychology; Gastrointestinal Diseases/epidemiology/psychology; Hernia/epidemiology/psychology; Intellectual Disability/epidemiology/psychology; Self-Injurious Behavior/epidemiology/psychology; Skin Diseases/epidemiology/psychology; Sleep Wake Disorders/epidemiology; Stomatognathic Diseases/epidemiology/psychology; behavioral problems; sleep disturbance; De Lange syndrome; trajectory; characteristics; self-injury
Creator
An entity primarily responsible for making the resource
Hall S; Arron K; Sloneem J; Oliver C
Description
An account of the resource
BACKGROUND: Self-injury, sleep problems and health problems are commonly reported in Cornelia de Lange Syndrome (CdLS) but there are no comparisons with appropriately matched participants. The relationship between these areas and comparison to a control group is warranted. METHOD: 54 individuals with CdLS were compared with 46 participants with intellectual disability (ID) of mixed aetiology who were similar in terms of degree of ID, mobility, age and gender using informant-based measures of health problems, sleep and self-injury. RESULTS: Participants with CdLS experienced significantly more current and lifetime health problems with eye problems and gastrointestinal disorders prominent. Although 55% of those with CdLS experienced sleep problems this prevalence was not different from the comparison group. Sleep disorder was not associated with self-injury in the CdLS group, skin problems were associated with severity of self-injury but not presence. DISCUSSION: People with CdLS experience a range of significant health problems and have more health concerns than others with the same degree of ID. Although this has been well documented in the past, the current high prevalence of health concerns indicates the need for regular health assessment and appropriate intervention.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1365-2788.2008.01047.x" target="_blank" rel="noreferrer noopener">10.1111/j.1365-2788.2008.01047.x</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).
2008
Adolescent
Arron K
behavioral problems
Case-Control Studies
characteristics
Comorbidity
De Lange syndrome
De Lange Syndrome/epidemiology/psychology
Ear Diseases/epidemiology/psychology
Eye Diseases/epidemiology/psychology
Female
Gastrointestinal Diseases/epidemiology/psychology
Hall S
Health Status
Hernia/epidemiology/psychology
Humans
Intellectual Disability/epidemiology/psychology
Journal Of Intellectual Disability Research
Male
Oliver C
Prevalence
Self-Injurious Behavior/epidemiology/psychology
self-injury
Severity Of Illness Index
Skin Diseases/epidemiology/psychology
sleep disturbance
Sleep Wake Disorders/epidemiology
Sloneem J
Stomatognathic Diseases/epidemiology/psychology
Surveys And Questionnaires
Trajectory
-
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/s0006-3223(01)01231-8" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/s0006-3223(01)01231-8</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
Psychiatric disorders and behavioral problems in children with velocardiofacial syndrome: usefulness as phenotypic indicators of schizophrenia risk
Publisher
An entity responsible for making the resource available
Biological Psychiatry
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Male; Comorbidity; Child; Humans; Adult; Adolescent; Female; Risk Factors; Phenotype; Child Behavior Disorders/genetics/psychology; Chromosome Deletion; Chromosomes Human Pair 22/genetics; Cognition Disorders/genetics/psychology; Developmental Disabilities/genetics/psychology; Mental Disorders/genetics/psychology; Schizophrenia/genetics; behavioral problems; 22q11.2 deletion syndrome; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Feinstein C; Eliez S; Blasey C; Reiss A L
Description
An account of the resource
BACKGROUND: Velocardiofacial syndrome (VCFS), a genetic deletion condition with numerous cognitive sequelae, is associated with a high rate of psychiatric disorders in childhood. More recently, VCFS has been identified as a high-risk factor for developing adult onset schizophrenia. However, it has never been demonstrated that the childhood psychiatric disorders found in children with VCFS differ from those found in children with a similar degree of cognitive impairment. Identification of a specific behavioral (psychiatric) phenotype in childhood VCFS offers the potential for elucidating the symptomatic precursors of adult onset schizophrenia. METHODS: Twenty-eight children with VCFS and 29 age- and cognitively matched control subjects received a standardized assessment of childhood psychiatric disorders and behaviors measured by the Child Behavior Checklist (CBCL). Findings from the two groups were compared. RESULTS: The rates and types of psychiatric disorder and behavior problems in VCFS and cognitively matched control subjects were very high, but showed no significant differences. CONCLUSIONS: Psychopathology in children with VCFS may not differ from that found in cognitively matched control subjects. Another explanation is that subtle phenotypic differences in behavior found in VCFS can not be observed using standard symptom inventories. The high rate of psychopathology in children with VCFS is not a useful phenotypic indicator of high risk for adult onset schizophrenia.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0006-3223(01)01231-8" target="_blank" rel="noreferrer noopener">10.1016/s0006-3223(01)01231-8</a>
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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).
2002
22q11.2 Deletion Syndrome
Adolescent
Adult
behavioral problems
Biological Psychiatry
Blasey C
characteristics
Child
Child Behavior Disorders/genetics/psychology
Chromosome Deletion
Chromosomes Human Pair 22/genetics
Cognition Disorders/genetics/psychology
Comorbidity
Developmental Disabilities/genetics/psychology
Eliez S
Feinstein C
Female
Humans
Male
Mental Disorders/genetics/psychology
Phenotype
Reiss A L
Risk Factors
Schizophrenia/genetics
Trajectory
-
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.pediatrneurol.2017.01.019" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pediatrneurol.2017.01.019</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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Preliminary Study of Neurodevelopmental Outcomes and Parenting Stress in Pediatric Mitochondrial Disease
Publisher
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Pediatric 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
emotion; child behavior; priority journal; intellectual impairment/dm [Disease Management]; prognosis; preschool child; parental stress; human; article; child; female; male; quality of life; clinical article; daily life activity; disease severity; aggression; intelligence quotient; childhood disease/dm [Disease Management]; comorbidity; Leigh disease/dm [Disease Management]; MELAS syndrome/dm [Disease Management]; nervous system development; problem behavior/dm [Disease Management]; anxiety disorder/dm [Disease Management]; attention disturbance/dm [Disease Management]; brain atrophy/dm [Disease Management]; delinquency; depression/dm [Disease Management]; drug resistant epilepsy/dm [Disease Management]; drug resistant epilepsy/dr [Drug Resistance]; intelligence; lactic acidosis/dm [Disease Management]; muscle disease/dm [Disease Management]; neuroimaging; nuclear magnetic resonance imaging; postnatal depression/dm [Disease Management]; psychomotor development; sleep disorder/dm [Disease Management]; social problem; somatization/dm [Disease Management]; thinking impairment/dm [Disease Management]; behavioral problems; Leigh syndrome; mitochondrial disorders; MELAS syndrome; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Eom S; Lee Y M
Description
An account of the resource
Background Little is known regarding the neuropsychological profiles of pediatric patients with mitochondrial diseases or their parents, information that is crucial for improving the quality of life (QOL) for both patients and parents. We aimed to delineate neurodevelopment and psychological comorbidity in children with mitochondrial diseases in the preliminary investigation of adequate intervention methods, better prognoses, and improved QOL for both patients and parents. Methods Seventy children diagnosed with mitochondrial diseases were neuropsychologically evaluated. Neurocognitive (development, intelligence) and psychological (behavior, daily living function, maternal depression, parenting stress) functions were analyzed. Clinical variables, including the first symptom, epileptic classification, organ involvement, lactic acidosis, brain magnetic resonance imaging findings, muscle pathology, biochemical enzyme assay results, and syndromic diagnosis of mitochondrial diseases, were also reviewed. Results Prediagnostic assessments indicated that cognitive and psychomotor developments were significantly delayed. Group mean full scale intelligence quotient (IQ) scores indicated mild levels of intellectual disability, borderline levels of verbal IQ impairment, and mild levels of intellectual disability on performance IQ. Many children exhibited clinically significant levels of behavioral problems, whereas mothers of children with mitochondrial diseases exhibited significant increases in parenting stress relative to mothers of healthy children. Furthermore, 65% of mothers exhibited significant levels of depression. Early onset of the first symptoms, diffuse brain atrophy, and drug-resistant epilepsy negatively influenced neurodevelopmental and adaptive functions. Conclusion Better understanding of the functional levels and profiles of neurodevelopment and psychological comorbidity in children with mitochondrial diseases in the prediagnostic period is essential for adequate support and QOL of children with mitochondrial diseases and their parents.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.pediatrneurol.2017.01.019" target="_blank" rel="noreferrer noopener">10.1016/j.pediatrneurol.2017.01.019</a>
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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
Aggression
anxiety disorder/dm [Disease Management]
Article
attention disturbance/dm [Disease Management]
behavioral problems
brain atrophy/dm [Disease Management]
characteristics
Child
Child Behavior
childhood disease/dm [Disease Management]
Clinical Article
Comorbidity
daily life activity
delinquency
depression/dm [Disease Management]
Disease Severity
drug resistant epilepsy/dm [Disease Management]
drug resistant epilepsy/dr [Drug Resistance]
Emotion
Eom S
Female
Human
intellectual impairment/dm [Disease Management]
Intelligence
Intelligence Quotient
lactic acidosis/dm [Disease Management]
Lee Y M
Leigh disease/dm [Disease Management]
Leigh syndrome
Male
MELAS syndrome
MELAS syndrome/dm [Disease Management]
mitochondrial disorders
muscle disease/dm [Disease Management]
nervous system development
neuroimaging
nuclear magnetic resonance imaging
Parental Stress
Pediatric Neurology
postnatal depression/dm [Disease Management]
Preschool Child
Priority Journal
problem behavior/dm [Disease Management]
Prognosis
psychomotor development
Quality Of Life
sleep disorder/dm [Disease Management]
social problem
somatization/dm [Disease Management]
thinking impairment/dm [Disease Management]
Trajectory
-
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/10.1046/j.1365-2788.2002.00361.x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1046/j.1365-2788.2002.00361.x</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 survey of the prevalence of stereotypy, self-injury and aggression in children and young adults with Cri du Chat syndrome
Publisher
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Journal of Intellectual Disability Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Male; Comorbidity; Surveys and Questionnaires; Child; Humans; Adult; Adolescent; Prevalence; Female; Aggression/psychology; Cri-du-Chat Syndrome/epidemiology; Self-Injurious Behavior/epidemiology; Stereotypic Movement Disorder/epidemiology; behavior; tone and motor problems; cri-du-chat; trajectory; characteristics; stereotypy; self-injury; aggression
Creator
An entity primarily responsible for making the resource
Collins M S; Cornish K
Description
An account of the resource
The aim of the present study was to determine the prevalence and frequency of stereotypy, self-injurious behaviour (SIB), and aggression in children and adults with Cri du Chat syndrome (CCS), and to investigate the relationship between SIB, aggressive behaviour and stereotypy in these individuals. Sixty-six families of children and adults diagnosed with CCS completed the Behaviour Problems Inventory. Additional information relating to gender, chronological age, type of school/post-school occupation and medication was also included in the survey. Stereotyped behaviour was reported for 82% of subjects, more than half the sample displaying it on a daily basis. The occurrence percentage of 15 topographies of SIB suggested that head banging, hitting the head against body parts, self-biting and rumination are the most frequently occurring behaviours in CCS. Aggressive behaviour was reported for 88%, with a statistically significant negative correlation between age and the number of aggressive behaviours reported. The present findings suggest that specific types of stereotypy and SIB are observed frequently in CCS.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1046/j.1365-2788.2002.00361.x" target="_blank" rel="noreferrer noopener">10.1046/j.1365-2788.2002.00361.x</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).
2002
Adolescent
Adult
Aggression
Aggression/psychology
Behavior
characteristics
Child
Collins M S
Comorbidity
Cornish K
Cri-du-chat
Cri-du-Chat Syndrome/epidemiology
Female
Humans
Journal Of Intellectual Disability Research
Male
Prevalence
Self-Injurious Behavior/epidemiology
self-injury
Stereotypic Movement Disorder/epidemiology
stereotypy
Surveys And Questionnaires
tone and motor problems
Trajectory
-
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/j.1365-2788.2007.01016.x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/j.1365-2788.2007.01016.x</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
Melatonin treatment in individuals with intellectual disability and chronic insomnia: a randomized placebo-controlled study
Publisher
An entity responsible for making the resource available
Journal of Intellectual Disability Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Saliva; Middle Aged; Treatment Outcome; Humans; Adolescent; Child Preschool; Double-Blind Method; Time Factors; Central Nervous System Depressants/adverse effects/therapeutic use; Melatonin/adverse effects/therapeutic use; Mental Retardation/epidemiology/psychology; Sleep Initiation and Maintenance Disorders/drug therapy/epidemiology/psychology; Q3 Literature Search; chronic disease; child; female; male; adult; comorbidity; aged; sleep disturbance/disorders; chromosome 18q deletion; MPS III; pharmacologic intervention; melatonin
Creator
An entity primarily responsible for making the resource
Braam W; Didden R; Smits M; Curfs L
Description
An account of the resource
BACKGROUND: While several small-number or open-label studies suggest that melatonin improves sleep in individuals with intellectual disabilities (ID) with chronic sleep disturbance, a larger randomized control trial is necessary to validate these promising results. METHODS: The effectiveness of melatonin for the treatment of chronic sleep disturbance was assessed in a randomized double-blind placebo-controlled trial with 51 individuals with ID. All of these individuals presented with chronic ideopatic sleep disturbance for more than 1 year. The study consisted of a 1-week baseline, followed by 4 weeks of treatment. Parents or other caregivers recorded lights off time, sleep onset time, night waking, wake up time and epileptic seizures. Endogenous melatonin cycle was measured in saliva before and after treatment. RESULTS: Compared with placebo, melatonin significantly advanced mean sleep onset time by 34 min, decreased mean sleep latency by 29 min, increased mean total sleep time by 48 min, reduced the mean number of times the person awoke during the night by 0.4, decreased the mean duration of these night waking periods by 17 min and advanced endogenous melatonin onset at night by an average of 2.01 h. Lights off time, sleep offset time and the number of nights per week with night waking did not change. Only few minor or temporary adverse reactions and no changes in seizure frequency were reported. CONCLUSIONS: Melatonin treatment improves some aspects of chronic sleep disturbance in individuals with ID.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1365-2788.2007.01016.x" target="_blank" rel="noreferrer noopener">10.1111/j.1365-2788.2007.01016.x</a>
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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).
2008
Adolescent
Adult
Aged
Braam W
Central Nervous System Depressants/adverse effects/therapeutic use
Child
Child Preschool
chromosome 18q deletion
Chronic Disease
Comorbidity
Curfs L
Didden R
Double-Blind Method
Female
Humans
Journal Of Intellectual Disability Research
Male
melatonin
Melatonin/adverse effects/therapeutic use
Mental Retardation/epidemiology/psychology
Middle Aged
MPS III
pharmacologic intervention
Q3 Scoping Review Results
Saliva
sleep disturbance/disorders
Sleep Initiation and Maintenance Disorders/drug therapy/epidemiology/psychology
Smits M
Time Factors
Treatment Outcome
-
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/10.1007/s11325-010-0432-6" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s11325-010-0432-6</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
Respiratory events and obstructive sleep apnea in children with achondroplasia: investigation and treatment outcomes
Publisher
An entity responsible for making the resource available
Sleep and Breathing
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Cross-Sectional Studies; Age Factors; Male; Treatment Outcome; Comorbidity; Child; Humans; Adolescent; Cohort Studies; Female; Child Preschool; Infant; Polysomnography; Body Mass Index; Achondroplasia/di [Diagnosis]; Achondroplasia/th [Therapy]; Sleep Apnea Central/di [Diagnosis]; Sleep Apnea Central/th [Therapy]; Sleep Apnea Obstructive/di [Diagnosis]; Sleep Apnea Obstructive/th [Therapy]; Achondroplasia/ep [Epidemiology]; Airway Obstruction/di [Diagnosis]; Airway Obstruction/ep [Epidemiology]; Airway Obstruction/th [Therapy]; Sleep Apnea Central/ep [Epidemiology]; Sleep Apnea Obstructive/ep [Epidemiology]; breathing difficulties; achondroplasia; trajectory; characteristics; obstructive sleep apnea
Creator
An entity primarily responsible for making the resource
Afsharpaiman S; Sillence D O; Sheikhvatan M; Ault J E; Waters K
Description
An account of the resource
PURPOSE: We report aspects of sleep-disordered breathing in a cohort of achondroplastic children who attended our hospital. METHODS: A retrospective chart review was conducted for a 15-year period to further evaluate the diagnosis and treatment of sleep-disordered breathing in children with achondroplasia. RESULTS: A review of the medical records was undertaken for 46 children (63%, mean age 3.9 years) with achondroplasia that had overnight polysomnography. Among them, 25 (54.3%) had obstructive sleep apnea (OSA). For 19 out of 46 patients (follow-up rate, 41.3%) with a mean follow-up of 31.3 months (range, 3 month to 11 years), 13 had undergone adenotonsillectomy, while nine were treated with continuous positive airway pressure. CONCLUSIONS: Prospective evaluation of our clinic population confirms a high incidence of SDB in achondroplastic children. OSA has been linked to raise intracranial pressure as well as neurocognitive deficits in children and we hypothesize that associations between neurological and respiratory abnormalities in this disorder are a consequence of the early onset of associated respiratory, rather than the neurological complications.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s11325-010-0432-6" target="_blank" rel="noreferrer noopener">10.1007/s11325-010-0432-6</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).
2011
achondroplasia
Achondroplasia/di [Diagnosis]
Achondroplasia/ep [Epidemiology]
Achondroplasia/th [Therapy]
Adolescent
Afsharpaiman S
Age Factors
Airway Obstruction/di [Diagnosis]
Airway Obstruction/ep [Epidemiology]
Airway Obstruction/th [Therapy]
Ault J E
Body Mass Index
breathing difficulties
characteristics
Child
Child Preschool
Cohort Studies
Comorbidity
Cross-sectional Studies
Female
Humans
Infant
Male
obstructive sleep apnea
Polysomnography
Sheikhvatan M
Sillence D O
Sleep and Breathing
Sleep Apnea Central/di [Diagnosis]
Sleep Apnea Central/ep [Epidemiology]
Sleep Apnea Central/th [Therapy]
Sleep Apnea Obstructive/di [Diagnosis]
Sleep Apnea Obstructive/ep [Epidemiology]
Sleep Apnea Obstructive/th [Therapy]
Trajectory
Treatment Outcome
Waters K
-
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
December 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
December 2019 List
URL Address
<a href="http://doi.org/10.1097/01.ccm.0000551170.37983.db" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.ccm.0000551170.37983.db</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
Palliative care integration in pediatric cardiac intensive care units: A novel champion-based model
Publisher
An entity responsible for making the resource available
Critical Care Medicine
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; comorbidity; conceptual framework; conceptual model; conference abstract; consensus; coronary care unit; feasibility study; heart development; heart disease; hospitalization; human; morbidity; outcome assessment; palliative therapy; prognosis; rotation; simulation; total quality management
Creator
An entity primarily responsible for making the resource
Moynihan K; Kaye E; Bailey V; Wolfe J; Thiagarajan R; Snaman J
Description
An account of the resource
Learning Objectives: Integration of pediatric palliative care (PPC) into the management of children with serious illness and their families is widely endorsed by international organizations and experts in the field as standard of care. However, timely referral to, and integration of PPC into the traditionally cure-orientated Cardiac Intensive Care Unit (CICU) remains variable. Despite significant declines in mortality for children with cardiac disease, key challenges confront the pediatric CICU community with regards to prognostication and discussion of goals of care. In the context of significant comorbidities and technological dependence, lengthy hospitalizations and recurrent admissions as well as interventions risking significant morbidity, these patients and families would benefit from PPC involvement across the illness trajectory. Methods: We propose a novel, conceptual framework for palliative care integration into the CICU using expert consensus and literature review. Results: The model utilizes CICU-based, interdisciplinary "champions". Pediatric Palliative Care Champions (PPCCs) would be identified from within the CICU team and receive additional training through PPC courses and rotations with sub-specialty PPC services. PPCCs would perform 3 primary roles. First, their clinical role as a liaison aims to strengthen provision of primary palliative care in daily CICU practice and improve utilization of sub-specialty PPC by encouraging earlier involvement in more complex patients' management. Second, PPCCs will lead educational and communication training of CICU staff including simulation sessions, focused on eliciting preferences, discussing prognosis, providing difficult news, assessing hopes and worries, and making goal-based recommendations. Third, PPCCs will be integral in CICU operational aspects and quality improvement initiatives including the development of CICU protocols and standard operating procedures to enhance the provision of high quality care at the end of life. Conclusions: This novel conceptual model for integration of PPC into CICUs is designed for adaptability in the context of cultural, financial, personnel, and logistic needs and constraints unique to each institution. While the PPCC framework offers several unique advantages over other care models, barriers to implementation are anticipated. Further research is needed to investigate the feasibility, acceptability, and potential efficacy of this model on standard outcome measures as well as patient- and parent-reported metrics.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.ccm.0000551170.37983.db" target="_blank" rel="noreferrer noopener">10.1097/01.ccm.0000551170.37983.db</a>
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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
Bailey V
Child
Comorbidity
Conceptual Framework
conceptual model
conference abstract
Consensus
coronary care unit
Critical Care Medicine
December 2019 List
Feasibility Study
heart development
heart disease
Hospitalization
Human
Kaye E
Morbidity
Moynihan K
outcome assessment
Palliative Therapy
Prognosis
Rotation
Simulation
Snaman J
Thiagarajan R
Total Quality Management
Wolfe 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
October 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
October 2019 List
URL Address
<a href="http://doi.org/10.1542/peds.2019-0160" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2019-0160</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
Integration of Pediatric Palliative Care Into Cardiac Intensive Care: A Champion-Based Model
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
article; child; human; palliative therapy; skill; coronary care unit; multicenter study; staff; patient referral; clinician; hospitalization; total quality management; mortality; comorbidity; conceptual framework; consensus; feasibility study; heart disease; morbidity; rotation
Creator
An entity primarily responsible for making the resource
Moynihan K M; Snaman J M; Kaye E C; Morrison W E; DeWitt A G; Sacks L D; Thompson J L; Hwang J M; Bailey V; Lafond D A; Wolfe J; Blume E D
Description
An account of the resource
Integration of pediatric palliative care (PPC) into management of children with serious illness and their families is endorsed as the standard of care. Despite this, timely referral to and integration of PPC into the traditionally cure-oriented cardiac ICU (CICU) remains variable. Despite dramatic declines in mortality in pediatric cardiac disease, key challenges confront the CICU community. Given increasing comorbidities, technological dependence, lengthy recurrent hospitalizations, and interventions risking significant morbidity, many patients in the CICU would benefit from PPC involvement across the illness trajectory. Current PPC delivery models have inherent disadvantages, insufficiently address the unique aspects of the CICU setting, place significant burden on subspecialty PPC teams, and fail to use CICU clinician skill sets. We therefore propose a novel conceptual framework for PPC-CICU integration based on literature review and expert interdisciplinary, multi-institutional consensus-building. This model uses interdisciplinary CICU-based champions who receive additional PPC training through courses and subspecialty rotations. PPC champions strengthen CICU PPC provision by (1) leading PPC-specific educational training of CICU staff; (2) liaising between CICU and PPC, improving use of support staff and encouraging earlier subspecialty PPC involvement in complex patients' management; and (3) developing and implementing quality improvement initiatives and CICU-specific PPC protocols. Our PPC-CICU integration model is designed for adaptability within institutional, cultural, financial, and logistic constraints, with potential applications in other pediatric settings, including ICUs. Although the PPC champion framework offers several unique advantages, barriers to implementation are anticipated and additional research is needed to investigate the model's feasibility, acceptability, and efficacy. Copyright © 2019 by the American Academy of Pediatrics.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2019-0160" target="_blank" rel="noreferrer noopener">10.1542/peds.2019-0160</a>
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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
Article
Bailey V
Blume E D
Child
Clinician
Comorbidity
Conceptual Framework
Consensus
coronary care unit
DeWitt A G
Feasibility Study
heart disease
Hospitalization
Human
Hwang J M
Kaye E C
Lafond D A
Morbidity
Morrison W E
Mortality
Moynihan K M
Multicenter Study
October 2019 List
Palliative Therapy
Patient Referral
Pediatrics
Rotation
Sacks L D
Skill
Snaman J M
Staff
Thompson J L
Total Quality Management
Wolfe 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
June 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
June 2019 List
URL Address
<a href="http://doi.org/10.1177/1049909119838985" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909119838985</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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Pediatric Complex Chronic Conditions: Does the Classification System Work for Infants?
Publisher
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The American Journal of Hospice & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
infant; complex chronic conditions; chronic disease; hospital patient; end-of-life; Caucasian; health care cost; serious illness; human; article; child; controlled study; attention; comorbidity; palliative therapy; prevalence; infants; African American; hcup kid; insurance; neonates; regression analysis
Creator
An entity primarily responsible for making the resource
Lindley L C; Fortney C A
Description
An account of the resource
BACKGROUND:: One widely accepted approach to identify children with life-limiting health problems is the complex chronic conditions (CCCs) classification system. Although considered the "gold standard" for classifying children with serious illness, little is known about its performance, especially among infants. OBJECTIVE/HYPOTHESIS:: This research examined the prevalence of CCCs and the infant characteristics related to a CCC classification. METHOD(S):: Multivariate regression analysis was conducted with 2012 Kids' Inpatient Database, Healthcare Cost and Utilization Project data files, using a national sample of infant decedents less than 1 year. RESULT(S):: Our findings showed that 40% of the infants were classified with a CCC. African Americans were negatively associated with a CCC classification (adjusted odds ratio [aOR] = 0.63; 95% confidence interval [CI] = 0.543-0.731). When infants had other insurance coverage, they were less likely (aOR = 0.63; 95% CI = 0.537-0.748) to have a CCC classification. Infants who resided in nonurban areas (aOR = 1.21; 95% CI =1.034-1.415) and had comorbidities (aOR = 38.19; 95% CI = 33.12-44.04) had greater odds of having a CCC classification. CONCLUSION(S):: The findings suggested that the infants are not commonly classified with a CCC and highlighted the significant variation in race with African American infants exhibiting different CCC classifications than Caucasian infants. Given the importance of reducing disparities in palliative care, critical attention to using CCC classifications in research is warranted.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909119838985" target="_blank" rel="noreferrer noopener">10.1177/1049909119838985</a>
2019
African American
Article
Attention
Caucasian
Child
Chronic Disease
Comorbidity
Complex Chronic Conditions
Controlled Study
end-of-life
Fortney C A
hcup kid
Health Care Cost
Hospital Patient
Human
Infant
Infants
Insurance
June 2019 List
Lindley L C
Neonates
Palliative Therapy
Prevalence
Regression Analysis
Serious Illness
The American Journal of Hospice & Palliative Care
-
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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March 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
March 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.12.037" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.1016/j.jpainsymman.2018.12.037</a>
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Title
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Introduction to a Novel Palliative Care Intervention for Family Caregivers of Children and Adolescents Living with Rare Diseases (TH308)
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
advance care planning; adolescent; pediatrics; feasibility study; palliative therapy; major clinical study; needs assessment; videorecording; caregiver; nonhuman; Human immunodeficiency virus; human experiment; malignant neoplasm; wellbeing; skill; conference abstract; human; child; female; male; controlled study; interview; comorbidity; uncertainty; medical care; social isolation; rare disease; health disparity; rigor
Creator
An entity primarily responsible for making the resource
Friebert S; Fratantoni K; Wiener L; Needle J; Fraser J; Gaines J; Alderfer M; Lyon M
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2018.12.037" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2018.12.037</a>
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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).
Description
An account of the resource
Objectives: *Establish the need for a family caregiver intervention for parents of children with rare diseases.*Introduce the intervention and its components.*Disseminate findings from the piloting of this intervention. In the U.S. a rare disease is defined as a condition affecting fewer than 200,000 persons. Pediatric patients with rare diseases experience high mortality. Pediatric advance care planning (pACP), a key component of pediatric palliative care, has been proven to improve communication and spiritual and emotional well-being for children with cancer and HIV and their families. For providers, pACP, involves preparation and skill development to facilitate discussions about goals of care and future medical care choices. Due to the uncertainty surrounding a rare disease diagnosis, social isolation and the likelihood of parents being asked to make complex medical decisions for their child, rare diseases exact a severe emotional toll on families. There is an urgent need for interventions to ease the suffering of these families, yet few empirically validated interventions exist to address these issues. Moreover, children with rare diseases are a heterogeneous group who because of co-morbidities are often excluded from research, thereby creating a health disparity. Available research lacks scientific rigor. Our consultation with families of children with rare diseases and with the National Organization for Rare Disorders revealed that basic palliative care needs should be addressed prior to a pACP intervention. Thus, we pilot tested the innovative FACE-Rare intervention, integrating two, previously adapted for pediatrics, evidence-based interventions: Carer Support Needs Assessment Tool (Sessions 1 & 2) plus Respecting Choices (Sessions 3 & 4). For acceptability, feasibility and safety purposes, we pilot tested the 4-session intervention, conducted exit interviews, baseline and 2-week post-intervention assessments. This session will review the existing research on the palliative care needs of family caregivers of children with rare diseases, introduce this innovative intervention and its components, disseminate findings from the beta testing and pilot testing, and discuss future directions for research. Video clips will also be presented.
2019
Adolescent
Advance Care Planning
Alderfer M
Caregiver
Child
Comorbidity
conference abstract
Controlled Study
Feasibility Study
Female
Fraser J
Fratantoni K
Friebert S
Gaines J
health disparity
Human
Human Experiment
Human Immunodeficiency Virus
Interview
Journal of Pain and Symptom Management
Lyon M
Major Clinical Study
Male
Malignant Neoplasm
March 2019 List
Medical Care
Needle J
Needs Assessment
Nonhuman
Palliative Therapy
Pediatrics
Rare Disease
rigor
Skill
Social Isolation
Uncertainty
videorecording
Wellbeing
Wiener L
-
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
2018 Developing World 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
Developing World 2018 List
URL Address
<a href="http://doi.org/10.1080/10428194.2016.1219904" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1080/10428194.2016.1219904</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
Early mortality in children with acute lymphoblastic leukemia in a developing country: the role of malnutrition at diagnosis. A multicenter cohort MIGICCL study
Publisher
An entity responsible for making the resource available
Leukemia & Lymphoma
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Age Factors; Male; Infant Newborn; Comorbidity; Proportional Hazards Models; children; Child; Humans; Adolescent; Prevalence; Socioeconomic Factors; Female; Child Preschool; Infant; mortality; Developing Countries; Population Surveillance; Remission Induction; prognosis; Leukemia; Body Weights and Measures; malnutrition; Malnutrition/diagnosis/epidemiology; Mexico/epidemiology; Precursor Cell Lymphoblastic Leukemia-Lymphoma/epidemiology/ mortality/therapy
Creator
An entity primarily responsible for making the resource
Martin-Trejo JA; Nunez-Enriquez JC; Fajardo-Gutierrez A; Medina-Sanson A; Flores-Lujano J; Jimenez-Hernandez E; Amador-Sanchez R; Penaloza-Gonzalez JG; Alvarez-Rodriguez FJ; Bolea-Murga V; Espinosa-Elizondo RM; de Diego Flores-Chapa J; Perez-Saldivar ML; Rodriguez-Zepeda MD; Dorantes-Acosta EM; Nunez-Villegas NN; Velazquez-Avina MM; Torres-Nava JR; Reyes-Zepeda NC; Gonzalez-Bonilla CR; Flores-Villegas LV; Rangel-Lopez A; Rivera-Luna R; Paredes-Aguilera R; Cardenas-Cardos R; Martinez-Avalos A; Gil-Hernandez AE; Duarte-Rodriguez DA; Mejia-Arangure JM
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/10428194.2016.1219904" target="_blank" rel="noreferrer noopener">10.1080/10428194.2016.1219904</a>
2017
Adolescent
Age Factors
Alvarez-Rodriguez FJ
Amador-Sanchez R
Body Weights and Measures
Bolea-Murga V
Cardenas-Cardos R
Child
Child Preschool
Children
Comorbidity
de Diego Flores-Chapa J
Developing Countries
Developing World 2018 List
Dorantes-Acosta EM
Duarte-Rodriguez DA
Espinosa-Elizondo RM
Fajardo-Gutierrez A
Female
Flores-Lujano J
Flores-Villegas LV
Gil-Hernandez AE
Gonzalez-Bonilla CR
Humans
Infant
Infant Newborn
Jimenez-Hernandez E
Leukemia
Leukemia & Lymphoma
Male
malnutrition
Malnutrition/diagnosis/epidemiology
Martin-Trejo JA
Martinez-Avalos A
Medina-Sanson A
Mejia-Arangure JM
Mexico/epidemiology
Mortality
Nunez-Enriquez JC
Nunez-Villegas NN
Paredes-Aguilera R
Penaloza-Gonzalez JG
Perez-Saldivar ML
Population Surveillance
Precursor Cell Lymphoblastic Leukemia-Lymphoma/epidemiology/ mortality/therapy
Prevalence
Prognosis
Proportional Hazards Models
Rangel-Lopez A
Remission Induction
Reyes-Zepeda NC
Rivera-Luna R
Rodriguez-Zepeda MD
Socioeconomic Factors
Torres-Nava JR
Velazquez-Avina MM
-
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/10.1007/s00520-014-2178-3" target="_blank" rel="noreferrer">http://doi.org/10.1007/s00520-014-2178-3</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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A cross-sectional study on prevalence of pain and breakthrough pain among an unselected group of outpatients in a tertiary cancer clinic
Publisher
An entity responsible for making the resource available
Supportive Care In Cancer : Official Journal Of The Multinational Association Of Supportive Care In Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
adolescent; Cross-Sectional Studies; Female; Humans; Male; Young Adult; Neoplasms; Pain Measurement; Cohort Studies; Adult; Prevalence; Aged; Middle Aged; Comorbidity; Ambulatory Care Facilities; Breakthrough Pain; Norway; Outpatients
Creator
An entity primarily responsible for making the resource
Raj Sunil X; Thronaes M; Brunelli C; Hjermstad MJ; Klepstad P; Kaasa S
Description
An account of the resource
PURPOSE: Systematic knowledge about the prevalence and the treatment effects of cancer pain in patients attending a general oncology outpatient department is limited. The purpose of this study was to investigate the prevalence of pain in a large representative cohort of patients attending a general oncology outpatient department in order to guide further screening, classification, and treatment of pain. MATERIAL AND METHODS: A cross-sectional study among patients visiting the outpatient clinic with histologically verified cancer, age≥18 years, adequate cognitive function, and no surgical procedures last 24 h were included. Pain was assessed by the Brief Pain Inventory and the Alberta Breakthrough Pain Assessment Tool. RESULTS: Three hundred five patients were included. The mean age was 60 years, 94% had a WHO performance status of 0-1 and 59% received oncological treatment with a curative intent. The mean score for average pain last 24 h (numerical rating scale, 0-10) and current pain was 1.84 and 1.08, respectively. Twenty-two percent reported pain score of ≥4 as their average pain in the previous 24 h. Twenty-one percent reported breakthrough pain (BTP). In multivariate analyses, sleep, BTP, age, treatment intent, and comorbidity was significantly associated with mean average pain in the previous 24 h and explained 29% of the variability of average pain in the previous 24 h. CONCLUSION: Of the patients at an oncology outpatient clinic, 22% reported clinically significant pain. These findings indicate that all patients are candidates to be screened for pain and, if present, a more detailed pain diagnosis should be established before any interventions can be recommended.
2014-07
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00520-014-2178-3" target="_blank" rel="noreferrer">10.1007/s00520-014-2178-3</a>
Rights
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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
Adult
Aged
Ambulatory Care Facilities
Backlog
Breakthrough Pain
Brunelli C
Cohort Studies
Comorbidity
Cross-sectional Studies
Female
Hjermstad MJ
Humans
Journal Article
Kaasa S
Klepstad P
Male
Middle Aged
Neoplasms
Norway
Outpatients
Pain Measurement
Prevalence
Raj Sunil X
Supportive Care In Cancer : Official Journal Of The Multinational Association Of Supportive Care In Cancer
Thronaes M
Young Adult
-
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/INF.0000000000000024" target="_blank" rel="noreferrer">http://doi.org/10.1097/INF.0000000000000024</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 laboratory factors that predict death in very low birth weight infants presenting with late-onset sepsis
Publisher
An entity responsible for making the resource available
The Pediatric Infectious Disease Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Female; Humans; infant; Male; retrospective studies; Intensive Care Units; Comorbidity; Risk Factors; Multivariate Analysis; Sepsis; Neonatal; Newborn; Connecticut; Very Low Birth Weight
Creator
An entity primarily responsible for making the resource
Levit O; Bhandari V; Li Fang-Yong; Shabanova V; Gallagher PG; Bizzarro MJ
Description
An account of the resource
BACKGROUND: Late-onset sepsis (LOS) in very low birth weight (VLBW) infants is associated with significant morbidity and mortality. The ability to predict mortality in infants with LOS based on clinical and laboratory factors at presentation of illness remains limited. OBJECTIVES: To identify predictors of sepsis-associated mortality from a composite risk profile that includes demographic data, category of infecting organism, clinical and laboratory data at onset of illness. STUDY DESIGN: Data were collected from VLBW infants with at least 1 episode of LOS admitted to Yale Neonatal Intensive Care Unit from 1989 through 2007. Episodes were categorized as Gram-positive, Gram-negative or fungal. Multivariate logistic regression analysis was used to compare and contrast different types of infections and to assess independent risk factors for death. RESULTS: Four hundred twenty-four cases of LOS were identified in 424 VLBW infants. Of these, 262 (62%) were categorized as Gram-positive, 126 (30%) as Gram-negative and 36 (8%) as fungal. Multivariate analyses revealed that infants with Gram-positive infections had significantly lower odds of death compared to those with Gram-negative (adjusted odds ratio: 0.17; 95% confidence interval: 0.08-0.36) or fungal LOS (adjusted odds ratio: 0.22; 95% confidence interval: 0.07-0.64). Need for intubation, initiation of pressors, hypoglycemia and thrombocytopenia as presenting laboratory signs of infection and necrotizing enterocolitis were independent risk factors for sepsis-related death. CONCLUSIONS: We identified presenting clinical and laboratory factors, including category of infecting organism, which predict the increased risk of LOS-related death. This information can be useful in estimating prognosis shortly after the onset of disease.
2014-02
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/INF.0000000000000024" target="_blank" rel="noreferrer">10.1097/INF.0000000000000024</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
Backlog
Bhandari V
Bizzarro MJ
Comorbidity
Connecticut
Female
Gallagher PG
Humans
Infant
Intensive Care Units
Journal Article
Levit O
Li Fang-Yong
Male
Multivariate Analysis
Neonatal
Newborn
Retrospective Studies
Risk Factors
Sepsis
Shabanova V
The Pediatric Infectious Disease Journal
Very Low Birth Weight
-
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/10.1177/0269216313484379" target="_blank" rel="noreferrer">http://doi.org/10.1177/0269216313484379</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
Impact of a palliative care initiative on end-of-life care in the general wards: A before-and-after study._
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
2014
Subject
The topic of the resource
Female; Humans; Male; retrospective studies; Palliative Care; Logistic Models; Aged; Comorbidity; cardiopulmonary resuscitation; Program Evaluation; Social Class; retrospective studies; DNAR; cardiopulmonary resuscitation; Resuscitation Orders; Chronic Disease/therapy; Palliative Care; DNAR Outcomes; Life Support Care/statistics & numerical data; Withholding Treatment/statistics & numerical data; Chronic Disease/epidemiology; Patient Admission/statistics & numerical data; Palliative Care; Hospital Mortality/trends; Advance Care Planning/st [Standards]; Forms and Records Control; Life Support Care/mt [Methods]; Advance Care Planning/standards; Asian; Chronic Disease/ep [Epidemiology]; Chronic Disease/th [Therapy]; Clinical Audit; Do-not-resuscitate orders; Forms and Records Control; general wards; Hospital Mortality/td [Trends]; Life Support Care/methods; Life Support Care/sn [Statistics & Numerical Data]; Patient Admission/statistics & numerical data; Patient Admission/td [Trends]; Patient Admission/trends; Resuscitation Orders; Singapore/ep [Epidemiology]; Singapore/epidemiology; Withholding Treatment/sn [Statistics & Numerical Data]
Creator
An entity primarily responsible for making the resource
Tan A; Seah A; Chua G; Lim Tow K; Phua J
Description
An account of the resource
BACKGROUND: Data on deaths in the general wards of our hospital in 2007 revealed infrequent discussions on end-of-life care and excessive burdensome interventions., AIM: A physician order form to withhold inappropriate life-sustaining interventions was initiated in 2009. The use of the form was facilitated by staff educational sessions and a palliative care consult service. This study aims to evaluate the impact of these interventions in 2010., DESIGN: Retrospective medical chart review with comparisons was made for the following: baseline patient characteristics, orders concerning life-sustaining therapies, treatment provided in last 24 h of life, and discussion of specific life-sustaining therapies with patients and families., SETTINGS/PARTICIPANTS: This study included all adult patients who died in our hospital's general wards in 2007 (N = 683) versus 2010 (N = 714)., RESULTS: There was an increase in orders to withhold life-sustaining therapies, such as cardiopulmonary resuscitation (66.2%-80.0%). There was a decrease in burdensome interventions such as antibiotics (44.9%-24.9%) and a small increase in palliative treatments such as analgesia (29.1%-36.7%). There were more discussions on the role of cardiopulmonary resuscitation with conversant patients (4.6%-10.2%) and families (56.5%-79.8%) (p-value all < 0.05). On multivariate analysis, the physician order form independently predicted orders to withhold cardiopulmonary resuscitation., CONCLUSIONS: A multifaceted intervention of a physician order form, educational sessions, and palliative care consult service led to an improvement in documentation of end-of-life discussions and was associated with an increase in such discussions and less burdensome treatments. There were small improvements in the proportion of palliative treatments administered.
2014
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216313484379" target="_blank" rel="noreferrer">10.1177/0269216313484379</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
Advance Care Planning/st [Standards]
Advance Care Planning/standards
Aged
Asian
Backlog
Cardiopulmonary Resuscitation
Chronic Disease/ep [Epidemiology]
Chronic Disease/epidemiology
Chronic Disease/th [Therapy]
Chronic Disease/therapy
Chua G
Clinical Audit
Comorbidity
DNAR
DNAR Outcomes
Do-not-resuscitate Orders
Female
Forms and Records Control
general wards
Hospital Mortality/td [Trends]
Hospital Mortality/trends
Humans
Journal Article
Life Support Care/methods
Life Support Care/mt [Methods]
Life Support Care/sn [Statistics & Numerical Data]
Life Support Care/statistics & numerical data
Lim Tow K
Logistic Models
Male
Palliative Care
Palliative Medicine
Patient Admission/statistics & numerical data
Patient Admission/td [Trends]
Patient Admission/trends
Phua J
Program Evaluation
Resuscitation Orders
Retrospective Studies
Seah A
Singapore/ep [Epidemiology]
Singapore/epidemiology
Social Class
Tan A
Withholding Treatment/sn [statistics & Numerical Data]
Withholding Treatment/statistics & Numerical Data
-
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
March 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
March 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jaac.2017.07.064" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jaac.2017.07.064</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
Enhancing resilience in hospitalized children and adolescents
Publisher
An entity responsible for making the resource available
Journal Of The American Academy Of Child And Adolescent Psychiatry
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
hospitalized child; Anxiety; biofeedback; California; Child; clinical psychology; Comorbidity; complication; distress syndrome; Female; Hospitalization; Human; Male; Mental Health; music; pain; Palliative therapy; pet therapy; PostTraumatic Stress Disorder; psychiatrist; psychosocial care; Socialization; wellbeing
Creator
An entity primarily responsible for making the resource
Ihle EC
Description
An account of the resource
Objectives: This presentation will describe a collaborative intervention that can enhance resilience in hospitalized patients when they are struggling with the emotional sequelae of their medical illness. The presentation will discuss the specialty services at the University of California, San Francisco, Benioff Children's Hospital (UCSF BCH) that work cooperatively to support salutogenesis (the origin of health), in contrast to pathogenesis. The efficacy of our multidisciplinary approach will be demonstrated through descriptions of changes in patients' mental status and subjective reports of distress from patients and parents. Methods: This seminar will present our multidisciplinary approach to enhancing well-being and supporting resilience. The presentation will describe the collaboration of several complementary specialties. Primary source material and anecdotal reports from clinical cases will be presented from these medical, psychological, and psychosocial disciplines. Results: At UCSF BCH, specialists play complementary roles in the effort to support the emotional well-being of hospitalized patients. The child and adolescent consultation-liaison psychiatrist provides insight into psychiatric comorbidities that may be contributing to distress and interfere with coping. Pharmacologic interventions target the symptoms of these comorbid illnesses. Pediatric palliative care physicians address the physiologic symptoms endured by children with serious medical illnesses. Clinical psychologists help to identify the feedback loop between anxiety and pain and enhance a sense of safety through empirically validated interventions for anxiety and traumatic stress. The Child Life Specialist's role includes preparation for procedures; creating and implementing a coping plan for individual procedures and overall hospitalization through art and music; and providing psychosocial support through socialization, medical play, pet therapy, and biofeedback. Conclusions: Diverse disciplines can work collaboratively to support the overall well-being of the hospitalized child and his/her family members by effectively promoting coping. This multidisciplinary approach to enhancing resilience enables children to thrive even if their illnesses are life-limiting.
2017
Identifier
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<a href="http://doi.org/10.1016/j.jaac.2017.07.064" target="_blank" rel="noreferrer">10.1016/j.jaac.2017.07.064</a>
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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
anxiety
biofeedback
California
Child
clinical psychology
Comorbidity
Complication
Distress Syndrome
Female
Hospitalization
Hospitalized Child
Human
Ihle EC
Journal Of The American Academy Of Child And Adolescent Psychiatry
Male
March 2018 List
Mental Health
music
Pain
Palliative Therapy
Pet Therapy
PostTraumatic Stress Disorder
psychiatrist
psychosocial care
Socialization
Wellbeing
-
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
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URL Address
<a href="http://doi.org/10.1016/j.genhosppsych.2009.03.012" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.genhosppsych.2009.03.012</a>
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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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Coping, self-efficacy and psychiatric history in patients with both chronic widespread pain and chronic fatigue
Publisher
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General Hospital Psychiatry
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
adolescent; Female; Humans; Male; Young Adult; Pain; Adult; Attitude to Health; Emotions; Questionnaires; Chronic disease; Aged; Middle Aged; Comorbidity; Self Efficacy; Fatigue; Problem Solving; Severity of Illness Index; Activities of Daily Living; Regression Analysis; Depressive Disorder; Adaptation; Psychological; Stress Disorders; Chronic; Fatigue Syndrome; Fibromyalgia; Major; Post-Traumatic
Creator
An entity primarily responsible for making the resource
Smith WR; Strachan ED; Buchwald D
Description
An account of the resource
OBJECTIVE: To investigate the relationship of coping style and self-efficacy to functional impairment in a group of patients with both chronic widespread pain (CWP) and chronic fatigue, as well as the possible mediating role of psychiatric diagnosis. METHODS: We identified 138 consecutive clinic patients who met criteria for CWP and chronic fatigue. We collected demographic and clinical characteristics, as well as measures of emotion-focused and problem-focused coping styles, fatigue-related self-efficacy and self-reported general health. Psychiatric diagnoses were determined with a structured interview. Short Form-36 subscales of pain-related and fatigue-related functioning were the dependent variables in ordinal multiple regression analyses to identify the best-fit model for each. RESULTS: In the final model for pain, increased functional impairment was associated with increased emotion-focused coping as well as less education, lower general health scores and higher body mass index. Conversely, in the final model for fatigue, increased functional impairment was significantly associated with less emotion-focused coping, lower general health scores and lower self-efficacy. CONCLUSIONS: The unexpected finding that emotion-focused coping was associated differently with chronic pain and fatigue among patients who experience both symptoms is discussed in the context of the research on the effects of self-efficacy and possible treatment approaches.
2009-08
Identifier
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<a href="http://doi.org/10.1016/j.genhosppsych.2009.03.012" target="_blank" rel="noreferrer">10.1016/j.genhosppsych.2009.03.012</a>
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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
2009
Activities of Daily Living
Adaptation
Adolescent
Adult
Aged
Attitude To Health
Backlog
Buchwald D
Chronic
Chronic Disease
Comorbidity
Depressive Disorder
Emotions
Fatigue
Fatigue Syndrome
Female
Fibromyalgia
General Hospital Psychiatry
Humans
Journal Article
Major
Male
Middle Aged
Pain
Post-traumatic
Problem Solving
Psychological
Questionnaires
Regression Analysis
Self Efficacy
Severity Of Illness Index
Smith WR
Strachan ED
Stress Disorders
Young Adult
-
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/10.1111/j.1365-2788.2007.01016.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1365-2788.2007.01016.x</a>
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Title
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Melatonin treatment in individuals with intellectual disability and chronic insomnia: a randomized placebo-controlled study
Publisher
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Journal Of Intellectual Disability Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Child; Female; Humans; Male; Adult; Aged; Middle Aged; Treatment Outcome; Comorbidity; Time Factors; Double-Blind Method; adolescent; Preschool; Q3 Literature Search; Chronic disease; Saliva; Central Nervous System Depressants/adverse effects/therapeutic use; Melatonin/adverse effects/therapeutic use; Mental Retardation/epidemiology/psychology; Sleep Initiation and Maintenance Disorders/drug therapy/epidemiology/psychology
Creator
An entity primarily responsible for making the resource
Braam W; Didden R; Smits M; Curfs L
Description
An account of the resource
BACKGROUND: While several small-number or open-label studies suggest that melatonin improves sleep in individuals with intellectual disabilities (ID) with chronic sleep disturbance, a larger randomized control trial is necessary to validate these promising results. METHODS: The effectiveness of melatonin for the treatment of chronic sleep disturbance was assessed in a randomized double-blind placebo-controlled trial with 51 individuals with ID. All of these individuals presented with chronic ideopatic sleep disturbance for more than 1 year. The study consisted of a 1-week baseline, followed by 4 weeks of treatment. Parents or other caregivers recorded lights off time, sleep onset time, night waking, wake up time and epileptic seizures. Endogenous melatonin cycle was measured in saliva before and after treatment. RESULTS: Compared with placebo, melatonin significantly advanced mean sleep onset time by 34 min, decreased mean sleep latency by 29 min, increased mean total sleep time by 48 min, reduced the mean number of times the person awoke during the night by 0.4, decreased the mean duration of these night waking periods by 17 min and advanced endogenous melatonin onset at night by an average of 2.01 h. Lights off time, sleep offset time and the number of nights per week with night waking did not change. Only few minor or temporary adverse reactions and no changes in seizure frequency were reported. CONCLUSIONS: Melatonin treatment improves some aspects of chronic sleep disturbance in individuals with ID.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1365-2788.2007.01016.x" target="_blank" rel="noreferrer">10.1111/j.1365-2788.2007.01016.x</a>
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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
Adolescent
Adult
Aged
Backlog
Braam W
Central Nervous System Depressants/adverse effects/therapeutic use
Child
Chronic Disease
Comorbidity
Curfs L
Didden R
Double-Blind Method
Female
Humans
Journal Article
Journal Of Intellectual Disability Research
Male
Melatonin/adverse effects/therapeutic use
Mental Retardation/epidemiology/psychology
Middle Aged
Preschool
Q3 Scoping Review Results
Saliva
Sleep Initiation and Maintenance Disorders/drug therapy/epidemiology/psychology
Smits M
Time Factors
Treatment Outcome
-
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/10.1151/ascp08424" target="_blank" rel="noreferrer">http://doi.org/10.1151/ascp08424</a>
Dublin Core
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Title
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Challenges in using opioids to treat pain in persons with substance use disorders
Publisher
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Addiction Science & Clinical Practice
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; Analgesics; Cooperative Behavior; Comorbidity; Long-Term Care; Motivation; Diagnostic and Statistical Manual of Mental Disorders; Primary Health Care; patient care team; Opioid/adverse effects/therapeutic use; Drug Tolerance; Opioid-Related Disorders/diagnosis/epidemiology/etiology/rehabilitation; Pain/drug therapy/epidemiology; Recurrence/prevention & control; Substance Withdrawal Syndrome/diagnosis/etiology; Substance-Related Disorders/epidemiology/rehabilitation
Creator
An entity primarily responsible for making the resource
Savage SR; Kirsh KL; Passik SD
Description
An account of the resource
Pain and substance abuse co-occur frequently, and each can make the other more difficult to treat. A knowledge of pain and its interrelationships with addiction enhances the addiction specialist's efficacy with many patients, both in the substance abuse setting and in collaboration with pain specialists. This article discusses the neurobiology and clinical presentation of pain and its synergies with substance use disorders, presents methodical approaches to the evaluation and treatment of pain that co-occurs with substance use disorders, and provides practical guidelines for the use of opioids to treat pain in individuals with histories of addiction. The authors consider that every pain complaint deserves careful investigation and every patient in pain has a right to effective treatment.
2008
Identifier
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<a href="http://doi.org/10.1151/ascp08424" target="_blank" rel="noreferrer">10.1151/ascp08424</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
Addiction Science & Clinical Practice
Analgesics
Backlog
Comorbidity
Cooperative Behavior
Diagnostic and Statistical Manual of Mental Disorders
Drug Tolerance
Humans
Journal Article
Kirsh KL
Long-Term Care
Motivation
Opioid-Related Disorders/diagnosis/epidemiology/etiology/rehabilitation
Opioid/adverse effects/therapeutic use
Pain/drug therapy/epidemiology
Passik SD
Patient Care Team
Primary Health Care
Recurrence/prevention & control
Savage SR
Substance Withdrawal Syndrome/diagnosis/etiology
Substance-Related Disorders/epidemiology/rehabilitation
-
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/10.1177/0883073809353149" target="_blank" rel="noreferrer">http://doi.org/10.1177/0883073809353149</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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Incidental neuroimaging findings in nonacute headache
Publisher
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Journal Of Child 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
Child; Cross-Sectional Studies; Female; Humans; Male; Cohort Studies; Comorbidity; adolescent; Preschool; retrospective studies; Headache Disorders/epidemiology/pathology/radiography; Incidental Findings; Nervous System Malformations/epidemiology/pathology/radiography
Creator
An entity primarily responsible for making the resource
Graf WD; Kayyali HR; Abdelmoity AT; Womelduff GL; Williams AR; Morriss MC
Description
An account of the resource
We studied the frequency and consequences of incidental neuroimaging findings in 400 otherwise healthy, nonacute pediatric headache patients through a retrospective, cross-sectional analysis. We excluded patients with currently recommended clinical criteria to consider diagnostic neuroimaging. We categorized neuroimaging results as normal, remarkable without clinical action, remarkable with clinical follow-up action, and abnormal. One hundred eighty-five of 400 patients (46%) had neuroimaging. Of these, 78.4% of neuroimaging studies were normal, and none was considered abnormal. Also, 21.5% had remarkable findings in the neuroradiology report. The frequency and types of all incidental findings were generally comparable to previous studies. One third of these patients received further consultation or neuroimaging because of incidental findings. In the evaluation of nonacute pediatric headache, overuse of neuroimaging leads to frequent discovery of incidental findings and increased testing. Individualized health care calls for physician-consumer discussions about current indications for neuroimaging, the general frequency of incidental findings, and potential difficulties in their interpretation.
2010
Identifier
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<a href="http://doi.org/10.1177/0883073809353149" target="_blank" rel="noreferrer">10.1177/0883073809353149</a>
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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
Abdelmoity AT
Adolescent
Backlog
Child
Cohort Studies
Comorbidity
Cross-sectional Studies
Female
Graf WD
Headache Disorders/epidemiology/pathology/radiography
Humans
Incidental Findings
Journal Article
Journal of Child Neurology
Kayyali HR
Male
Morriss MC
Nervous System Malformations/epidemiology/pathology/radiography
Preschool
Retrospective Studies
Williams AR
Womelduff GL
-
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/10.1503/cmaj.091278" target="_blank" rel="noreferrer">http://doi.org/10.1503/cmaj.091278</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
Handgrip strength and mortality in the oldest old population: the Leiden 85-plus study
Publisher
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Canadian Medical Association Journal
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; mortality; Follow-Up Studies; Prospective Studies; Aged; Comorbidity; Netherlands; Activities of Daily Living; Depression; Kaplan-Meier Estimate; Disability Evaluation; 80 and over; Study Design; Neuropsychological Tests; Hand Strength; Cardiovascular Diseases; Muscle Strength Dynamometer
Creator
An entity primarily responsible for making the resource
Ling CHY; Taekema D; de Craen Anton JM; Gussekloo J; Westendorp RG; Maier AB
Description
An account of the resource
BACKGROUND: Poor muscular strength has been shown to be associated with increased morbidity and mortality in diverse samples of middle-aged and elderly people. However, the oldest old population (i.e., over 85 years) is underrepresented in such studies. Our objective was to assess the association between muscular strength and mortality in the oldest old population. METHODS: We included 555 participants (65% women) from the Leiden 85-plus study, a prospective population-based study of all 85-year-old inhabitants of Leiden, Netherlands. We measured the handgrip strength of participants at baseline and again at age 89 years. We collected baseline data on comorbidities, functional status, levels of physical activity, and adjusted for potential confounders. During the follow-up period, we collected data on mortality. RESULTS: During a follow-up period of 9.5 years (range 8.5-10.5 years), 444 (80%) participants died. Risk for all-cause mortality was elevated among participants in the lowest tertile of handgrip strength at age 85 years (hazard ratio [HR] 1.35, 95% confidence interval [CI] 1.00-1.82, p = 0.047) and the lowest two tertiles of handgrip strength at age 89 years (HR 2.04, CI 1.24-3.35, p = 0.005 and HR 1.73, CI 1.11-2.70, p = 0.016). We also observed significantly increased mortality among participants in the tertile with the highest relative loss of handgrip strength over four years (HR 1.72, CI 1.07-2.77, p = 0.026). INTERPRETATION: Handgrip strength, a surrogate measurement of overall muscular strength, is a predictor of all-cause mortality in the oldest old population and may serve as a convenient tool for prognostication of mortality risk among elderly people.
2010-03
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1503/cmaj.091278" target="_blank" rel="noreferrer">10.1503/cmaj.091278</a>
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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
80 And Over
Activities of Daily Living
Aged
Backlog
Canadian Medical Association Journal
Cardiovascular Diseases
Comorbidity
de Craen Anton JM
Depression
Disability Evaluation
Female
Follow-up Studies
Gussekloo J
Hand Strength
Humans
Journal Article
Kaplan-Meier Estimate
Ling CHY
Maier AB
Male
Mortality
Muscle Strength Dynamometer
Netherlands
Neuropsychological Tests
Prospective Studies
Study Design
Taekema D
Westendorp RG
-
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/10.1016/j.admecli.2006.06.003" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.admecli.2006.06.003</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
Adolescent psychopharmacology: drugs for mood disorders
Publisher
An entity responsible for making the resource available
Adolescent Medicine Clinics
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Humans; Comorbidity; Diagnostic and Statistical Manual of Mental Disorders; Primary Health Care; adolescent; Safety; Antimanic Agents/adverse effects/therapeutic use; Antidepressive Agents/adverse effects/therapeutic use; Attention Deficit Disorder with Hyperactivity/epidemiology; Mood Disorders/diagnosis/drug therapy/epidemiology; Suicide/prevention & control
Creator
An entity primarily responsible for making the resource
Bolfek A; Jankowski JJ; Waslick B; Summergrad P
Description
An account of the resource
This article reviews mood disorders in children and adolescents, the diagnostic criteria, and important differential diagnoses to be considered. Critical points in the treatment of mood disorders and comorbid conditions and the important role the primary care provider can play in their management are stressed. Warning signs to identify adolescents who may be at risk of attempting suicide are discussed.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.admecli.2006.06.003" target="_blank" rel="noreferrer">10.1016/j.admecli.2006.06.003</a>
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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
2006
Adolescent
Adolescent Medicine Clinics
Antidepressive Agents/adverse effects/therapeutic use
Antimanic Agents/adverse effects/therapeutic use
Attention Deficit Disorder with Hyperactivity/epidemiology
Backlog
Bolfek A
Comorbidity
Diagnostic and Statistical Manual of Mental Disorders
Humans
Jankowski JJ
Journal Article
Mood Disorders/diagnosis/drug therapy/epidemiology
Primary Health Care
Safety
Suicide/prevention & control
Summergrad P
Waslick B
-
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/10.1016/j.jpainsymman.2004.05.007" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2004.05.007</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
HIV/AIDS symptom management in Southern Africa
Publisher
An entity responsible for making the resource available
Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
PedPal Lit; statistics & numerical data Research Support; 80 and over; Anti-HIV Agents/therapeutic use; Child; Comorbidity; Complementary Therapies/methods/statistics & numerical data; Data Collection; Diet; Therapy/statistics & numerical data; Female; Humans; Male; Middle Aged; Palliative Care/; Acquired Immunodeficiency Syndrome/diagnosis/epidemiology/therapy Adolescent Adult Africa; methods; Non-U.S. Gov't Self Care/methods/statistics & numerical data; Southern/epidemiology Aged Aged
Creator
An entity primarily responsible for making the resource
Sukati NA; Mndebele SC; Makoa ET; Ramukumba TS; Makoae LN; Seboni NM; Human S; Holzemer WL
Description
An account of the resource
We describe self-reported strategies used by persons living with HIV/AIDS in Botswana, Lesotho, South Africa, and Swaziland to manage common HIV-related symptoms. A questionnaire asked participants to list three to six symptoms they had recently experienced, the care strategies they had used to make them better, where they had learned the strategy, and to rate the perceived effectiveness of the strategy. Data were collected in 2002 from 743 persons. The self-care management strategies were coded into eight categories: medications, complementary treatments, self-comforting, changing diet, seeking help, exercise, spiritual care, and daily thoughts/activities. Overall, participants reported medications as the most frequently occurring management strategy and the most effective. A very small inventory of behavioral strategies was available to participants to help them manage their HIV-related symptoms.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2004.05.007" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2004.05.007</a>
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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
2005
80 And Over
Acquired Immunodeficiency Syndrome/diagnosis/epidemiology/therapy Adolescent Adult Africa
Anti-HIV Agents/therapeutic use
Backlog
Child
Comorbidity
Complementary Therapies/methods/statistics & numerical data
Data Collection
Diet
Female
Holzemer WL
Human S
Humans
Journal Article
Journal of Pain and Symptom Management
Makoa ET
Makoae LN
Male
Methods
Middle Aged
Mndebele SC
Non-U.S. Gov't Self Care/methods/statistics & numerical data
Palliative Care/
PedPal Lit
Ramukumba TS
Seboni NM
Southern/epidemiology Aged Aged
statistics & numerical data Research Support
Sukati NA
Therapy/statistics & numerical data
-
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/10.1089/jpm.2005.8.26" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2005.8.26</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
Impact of palliative care case management on resource use by patients dying of cancer at a Veterans Affairs medical center
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Female; Humans; Male; Terminal Care; Logistic Models; Aged; Middle Aged; Comorbidity; Length of Stay; Hospitals; Comparative Study; retrospective studies; Case Management/organization & administration; Neoplasms/mortality/therapy; Palliative Care/statistics & numerical data/utilization; Veterans
Creator
An entity primarily responsible for making the resource
Back AL; Li YF; Sales AE
Description
An account of the resource
BACKGROUND: The VA Puget Sound Health Care System (VAPSHCS) started a palliative care service (PCS) in October 2001 to provide case management for patients with advanced cancer. OBJECTIVE: To examine resource use during the last 60 days of life for patients dying of cancer who received PCS compared to patients receiving usual care (non-PCS) during the same time period. DESIGN: Retrospective nonrandomized comparison of resource use using administrative data. SETTING: Tertiary care Veterans Affairs medical center. PARTICIPANTS: All patients who died of cancer between October 1, 2001 and October 31, 2002 at VAPSHCS. RESULTS: Two hundred sixty-five patients died of cancer during the specified time period, including 82 PCS and 183 non-PCS patients. PCS patients received case management for a mean of 79 days, and were younger, had more comorbid conditions, and were more likely to have had chemotherapy in the last 60 days of life than non-PCS patients. Variables associated with more acute care bed days in the last 60 days of life included: chemotherapy in the last 60 days of life, and a length of stay on PCS less than 60 days. Variables associated with fewer acute care bed days within the last 60 days of life included: being married, and a length of stay on PCS 60 days or more. Compared to non-PCS patients, the place of death for PCS patients was less likely to be acute care. CONCLUSION: PCS for 60 or more days prior to death was associated with decreased use of acute care hospital resources for patients dying of cancer.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2005.8.26" target="_blank" rel="noreferrer">10.1089/jpm.2005.8.26</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
2005
Aged
Back AL
Backlog
Case Management/organization & administration
Comorbidity
Comparative Study
Female
Hospitals
Humans
Journal Article
Journal of Palliative Medicine
Length Of Stay
Li YF
Logistic Models
Male
Middle Aged
Neoplasms/mortality/therapy
Palliative Care/statistics & numerical data/utilization
Retrospective Studies
Sales AE
Terminal Care
Veterans
-
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/10.1111/j.1440-1746.2005.03993.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1440-1746.2005.03993.x</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
Morbidity and mortality after percutaneous endoscopic gastrostomy in children with neurological disability
Publisher
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Journal Of Gastroenterology And Hepatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Female; Humans; Male; Survival Rate; Adult; Treatment Outcome; Comorbidity; Survival Analysis; Risk Factors; Incidence; adolescent; Preschool; infant; Nutritional Failure; Australia/epidemiology; Endoscopy; Gastrointestinal/mortality; Gastrostomy/mortality; Malnutrition/mortality/prevention & control; Nervous System Diseases/mortality/surgery; Risk Assessment/methods
Creator
An entity primarily responsible for making the resource
Catto-Smith AG; Jimenez S
Description
An account of the resource
BACKGROUND AND AIM: Gastrostomy placement has become an integral mechanism for delivering nutritional support to children with severe neurological disability. Its impact on gastroesophageal reflux and mortality remains contentious. We examined the morbidity and long-term mortality of a group of children with severe neurological disability after percutaneous endoscopic gastrostomy (PEG). METHODS: We retrospectively identified all children with severe neurological disability who had a PEG at the Royal Children's Hospital in Melbourne between 1990 and 1997. Data were obtained from medical records. RESULTS: Ninety-eight children with neurological disability (M:F 1.8:1.0; median age 3.5 years, interquartile range 1.1-8.7 years) had an initial PEG in this period and were able to be followed for 6-14 years. As a group, they were underweight for their age with a Z score at PEG of -3.52 (SD 3.33), but had increased weight-for-age Z scores by 1.05 after a mean period of 6.1 months. Fourteen subsequently required fundoplication for reflux. Mortality rates were 11% after 1 year, 21% after 2 years, 27% after 3 years and 39% after 13 years. Mortality was increased in those children who were older at the time of PEG (P = 0.06). Gastroesophageal reflux, underweight-for-age and gender were not significantly related to mortality. CONCLUSION: Children with severe neurological dysfunction who require gastrostomy feeding have a substantial long-term mortality, but this may be unrelated to PEG placement.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1440-1746.2005.03993.x" target="_blank" rel="noreferrer">10.1111/j.1440-1746.2005.03993.x</a>
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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
2006
Adolescent
Adult
Australia/epidemiology
Backlog
Catto-Smith AG
Child
Comorbidity
Endoscopy
Female
Gastrointestinal/mortality
Gastrostomy/mortality
Humans
Incidence
Infant
Jimenez S
Journal Article
Journal Of Gastroenterology And Hepatology
Male
Malnutrition/mortality/prevention & control
Nervous System Diseases/mortality/surgery
Nutritional Failure
Preschool
Risk Assessment/methods
Risk Factors
Survival Analysis
Survival Rate
Treatment Outcome
-
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/10.1007/s00134-003-1989-3" target="_blank" rel="noreferrer">http://doi.org/10.1007/s00134-003-1989-3</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
Decisions to forgo life-sustaining therapy in ICU patients independently predict hospital death
Publisher
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Intensive Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Female; Humans; Male; Hospital Mortality; Prospective Studies; Aged; Middle Aged; Comorbidity; Resuscitation Orders; Severity of Illness Index; Survival Analysis; Risk Factors; Hospitals; Analysis of Variance; Predictive Value of Tests; Proportional Hazards Models; Teaching; 80 and over; Empirical Approach; Death and Euthanasia; decision making; ICU Decision Making; Intensive Care Units/statistics & numerical data; APACHE; Critical Care/statistics & numerical data; Life Support Care/statistics & numerical data; Paris/epidemiology; Withholding Treatment/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Azoulay E; Pochard F; Garrouste-Orgeas M; Moreau D; Montesino L; Adrie C; deLassence A; Cohen Y; Timsit JF; Outcomerea Study Group
Description
An account of the resource
OBJECTIVE: More than one-half the deaths of patients admitted to intensive care units (ICUs) occur after a decision to forgo life-sustaining therapy (DFLST). Although DFLSTs typically occur in patients with severe comorbidities and intractable acute medical disorders, other factors may influence the likelihood of DFLSTs. The objectives of this study were to describe the factors and mortality associated with DFLSTs and to evaluate the potential independent impact of DFLSTs on hospital mortality. DESIGN AND SETTING: Prospective multicenter 2-year study in six ICUs in France. PATIENTS: The 1,698 patients admitted to the participating ICUs during the study period, including 295 (17.4%) with DFLSTs. MEASUREMENTS AND RESULTS: The impact of DFLSTs on hospital mortality was evaluated using a model that incorporates changes in daily logistic organ dysfunction scores during the first ICU week. Univariate predictors of death included demographic factors (age, gender), comorbidities, reasons for ICU admission, severity scores at ICU admission, and DFLSTs. In a stepwise Cox model five variables independently predicted mortality: good chronic health status (hazard ratio, 0.479), SAPS II score higher than 39 (2.05), chronic liver disease (1.463), daily logistic organ dysfunction score (1.357 per point), and DFLSTs (1.887). CONCLUSIONS: DFLSTs remain independently associated with death after adjusting on comorbidities and severity at ICU admission and within the first ICU week. This highlights the need for further clarifying the many determinants of DFLSTs and for routinely collecting DFLSTs in studies with survival as the outcome variable of interest.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00134-003-1989-3" target="_blank" rel="noreferrer">10.1007/s00134-003-1989-3</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
2003
80 And Over
Adrie C
Aged
Analysis of Variance
APACHE
Azoulay E
Backlog
Cohen Y
Comorbidity
Critical Care/statistics & numerical data
Death and Euthanasia
Decision Making
deLassence A
Empirical Approach
Female
Garrouste-Orgeas M
Hospital Mortality
Hospitals
Humans
ICU Decision Making
Intensive Care Medicine
Intensive Care Units/statistics & numerical data
Journal Article
Life Support Care/statistics & numerical data
Male
Middle Aged
Montesino L
Moreau D
Outcomerea Study Group
Paris/epidemiology
Pochard F
Predictive Value of Tests
Proportional Hazards Models
Prospective Studies
Resuscitation Orders
Risk Factors
Severity Of Illness Index
Survival Analysis
Teaching
Timsit JF
Withholding Treatment/statistics & Numerical Data
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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.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1097/00003246-200103000-00035" target="_blank" rel="noreferrer">http://doi.org/10.1097/00003246-200103000-00035</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
Long-stay patients in the pediatric intensive care unit
Publisher
An entity responsible for making the resource available
Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Child; Female; Humans; Male; Intensive Care Units; Hospital Mortality; Logistic Models; Treatment Outcome; Comorbidity; Health Services Research; Severity of Illness Index; Risk Factors; Quality of Health Care; Sensitivity and Specificity; Analysis of Variance; Predictive Value of Tests; Cost Savings; Preschool; infant; algorithms; Pediatric/utilization; ICU Decision Making; United States/epidemiology; Age Distribution; Discriminant Analysis; Patient Admission/statistics & numerical data; Length of Stay/statistics & numerical data; Emergencies; Decision Trees; Intensive Care/economics/standards
Creator
An entity primarily responsible for making the resource
Marcin JP; Slonim AD; Pollack MM; Ruttimann UE
Description
An account of the resource
OBJECTIVE: Length of stay in the pediatric intensive care unit (PICU) is a reflection of patient severity of illness and health status, as well as PICU quality and performance. We determined the clinical profiles and relative resource use of long-stay patients (LSPs) and developed a prediction model to identify LSPs for early quality and cost saving interventions. DESIGN: Nonconcurrent cohort study. SETTING: A total of 16 randomly selected PICUs and 16 volunteer PICUs. PATIENTS: A total of 11,165 consecutive admissions to the 32 PICUs. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: LSPs were defined as patients having a length of stay greater than the 95th percentile (>12 days). Logistic regression analysis was used to determine which clinical characteristics, available within the first 24 hrs after admission, were associated with LSPs and to create a predictive algorithm. Overall, LSPs were 4.7% of the population but represented 36.1% of the days of care. Multivariate analysis indicated that the following factors are predictive of long stays: age <12 months, previous ICU admission, emergency admission, no CPR before admission, admission from another ICU or intermediate care unit, chronic care requirements (total parenteral nutrition and tracheostomy), specific diagnoses including acquired cardiac disease, pneumonia, and other respiratory disorders, having never been discharged from the hospital, need for ventilatory support or an intracranial catheter, and a Pediatric Risk of Mortality III score between 10 and 33. The performance of the prediction algorithm in both the training and validation samples for identifying LSPs was good for both discrimination (area under the receiver operating characteristics curve of 0.83 and 0.85, respectively), and calibration (goodness of fit, p = .33 and p = .16, respectively). LSPs comprised from 2.1% to 8.1% of individual ICU patients and occupied from 15.2% to 57.8% of individual ICU bed days. CONCLUSIONS: LSPs have less favorable outcomes and use more resources than non-LSPs. The clinical profile of LSPs includes those who are younger and those that require chronic care devices. A predictive algorithm could help identify patients at high risk of prolonged stays appropriate for specific interventions.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00003246-200103000-00035" target="_blank" rel="noreferrer">10.1097/00003246-200103000-00035</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
2001
Age Distribution
algorithms
Analysis of Variance
Backlog
Child
Comorbidity
Cost Savings
Critical Care Medicine
Decision Trees
Discriminant Analysis
Emergencies
Female
Health Services Research
Hospital Mortality
Humans
ICU Decision Making
Infant
Intensive Care Units
Intensive Care/economics/standards
Journal Article
Length Of Stay/statistics & Numerical Data
Logistic Models
Male
Marcin JP
Patient Admission/statistics & numerical data
Pediatric/utilization
Pollack MM
Predictive Value of Tests
Preschool
Quality Of Health Care
Risk Factors
Ruttimann UE
Sensitivity and Specificity
Severity Of Illness Index
Slonim AD
Treatment Outcome
United States/epidemiology
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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.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1528-1157.1996.tb00533.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1528-1157.1996.tb00533.x</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
Influence of epilepsy on mortality in mental retardation: an epidemiologic study
Publisher
An entity responsible for making the resource available
Epilepsia
Date
A point or period of time associated with an event in the lifecycle of the resource
1996
Subject
The topic of the resource
Cohort Studies; Adult; Prevalence; Follow-Up Studies; Comorbidity; Epilepsy; Severity of Illness Index; Confidence Intervals; cause of death; Human; mortality; Middle Age; Epilepsy/mo [Mortality]; Mental Retardation/mo [Mortality]; Cerebral Palsy/ep [Epidemiology]; Cerebral Palsy/mo [Mortality]; Epilepsy/di [Diagnosis]; Epilepsy/ep [Epidemiology]; Generalized/di [Diagnosis]; Generalized/ep [Epidemiology]; Generalized/mo [Mortality]; Mental Retardation/di [Diagnosis]; Mental Retardation/ep [Epidemiology]; Pneumonia/ep [Epidemiology]; Pneumonia/mo [Mortality]; Sweden/ep [Epidemiology]
Creator
An entity primarily responsible for making the resource
Forsgren L; Edvinsson SO; Nystrom L; Blomquist HK
Description
An account of the resource
PURPOSE: A cohort consisting of all persons with known mental retardation (MR) and living in a Swedish province on December 31, 1985, was followed for 7 years (1987-1992) to study the mortality pattern. METHODS: A file of the cohort was linked to the cause-of-death pattern of the general population in the study area. RESULTS: One hundred twenty-four deaths (8.4%) occurred among the 1,478 persons with MR. Thirty deaths (10.1%) occurred among the 296 persons with epilepsy and MR. The standardized mortality ratio (SMR) in those with only MR was significantly increased as compared with that of the general population: 1.6 [95% confidence interval (CI) 1.3-2.0]; MR and epilepsy, 5.0 (CI 3.3-7.5); and MR, epilepsy, and cerebral palsy (CP), 5.8 (CI 3.4-9.7). Mortality was increased both in patients with partial seizures without seizures secondarily generalized (SMR 3.7, CI 1.0-13.6) and in patients with seizures secondarily generalized (5.0, CI 2.3-11.0). The highest mortality occurred in patients who had seizures that were always generalized from the onset: 8.1 (CI 5.7-11.5). Mortality increased with increasing seizure frequency during the year preceding the prevalence date. In patients with epilepsy and MR, pneumonia was the most common cause of death and a seizure was the probable cause of death in 6.7%. CONCLUSIONS: Epilepsy is associated with a significantly increased mortality in persons with MR. The increase is related to seizure type and seizure frequency. Death in persons with epilepsy and MR is seldom directly due to seizures. Other impairments associated with epilepsy and MR are important causes of death.
1996
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1528-1157.1996.tb00533.x" target="_blank" rel="noreferrer">10.1111/j.1528-1157.1996.tb00533.x</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
1996
Adult
Backlog
Blomquist HK
Cause Of Death
Cerebral Palsy/ep [Epidemiology]
Cerebral Palsy/mo [Mortality]
Cohort Studies
Comorbidity
Confidence Intervals
Edvinsson SO
Epilepsia
Epilepsy
Epilepsy/di [diagnosis]
Epilepsy/ep [Epidemiology]
Epilepsy/mo [Mortality]
Follow-up Studies
Forsgren L
Generalized/di [Diagnosis]
Generalized/ep [Epidemiology]
Generalized/mo [Mortality]
Human
Journal Article
Mental Retardation/di [Diagnosis]
Mental Retardation/ep [Epidemiology]
Mental Retardation/mo [Mortality]
Middle Age
Mortality
Nystrom L
Pneumonia/ep [Epidemiology]
Pneumonia/mo [Mortality]
Prevalence
Severity Of Illness Index
Sweden/ep [Epidemiology]