1
40
6
-
Text
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URL Address
<a href="http://doi.org/10.1016/j.jcf.2008.06.003" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jcf.2008.06.003</a>
Dublin Core
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Title
A name given to the resource
An international/multicentre report on patients with cystic fibrosis (CF) over the age of 40 years
Publisher
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Journal Of Cystic Fibrosis
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Female; Humans; Male; Survival Rate; Cohort Studies; Adult; Canada; Aged; Middle Aged; Minnesota; Longevity; Italy; Adolescent Transitions; retrospective studies; Age Distribution; Life Expectancy; Sex Distribution; Cystic Fibrosis/complications/epidemiology/physiopathology; London
Creator
An entity primarily responsible for making the resource
Hodson ME; Simmonds NJ; Warwick WJ; Tullis E; Castellani C; Assael B; Dodge JA; Corey M; International Study Of Aging In Cystic Fibrosis
Description
An account of the resource
BACKGROUND: The lifespan of patients with cystic fibrosis (CF) is increasing significantly. The objective of this international pilot study was to study the characteristics of these long-term survivors. METHODS: Four centres with large CF clinics from London (UK), Minneapolis (USA), Toronto (Canada) and Verona (Italy) identified 366 patients who had survived 40 years and longer. RESULTS: At all centres males survived longer than females. There were more pancreatic sufficient patients in Verona (60%) and Toronto (40%) than in London (16%) and Minneapolis (21%). The percentage of DeltaF508 homozygous patients varied between 47% in London and 45% in Minneapolis to only 26% in Toronto and 9% in Verona. Average FEV(1) and BMI values of the surviving population appeared to stabilise after 40 years of age. FEV(1) was on average 12% higher in patients who were pancreatic sufficient (p > 0.0001). There was no difference in survival between the centres. The overall median survival after the age of 40 was 13 years. The estimated annual death rate was approximately 3.4% from the age of 40-60 years. CONCLUSIONS: Significant numbers of patients are now surviving to 40 years or more, and it is hoped that an in-depth study of these patients may identify the factors contributing to longer survival.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jcf.2008.06.003" target="_blank" rel="noreferrer">10.1016/j.jcf.2008.06.003</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
2008
Adolescent Transitions
Adult
Age Distribution
Aged
Assael B
Backlog
Canada
Castellani C
Cohort Studies
Corey M
Cystic Fibrosis/complications/epidemiology/physiopathology
Dodge JA
Female
Hodson ME
Humans
International Study Of Aging In Cystic Fibrosis
Italy
Journal Article
Journal of Cystic Fibrosis
Life Expectancy
London
Longevity
Male
Middle Aged
Minnesota
Retrospective Studies
Sex Distribution
Simmonds NJ
Survival Rate
Tullis E
Warwick WJ
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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/10.1002/cncr.21315" target="_blank" rel="noreferrer">http://doi.org/10.1002/cncr.21315</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
Anorexia/cachexia-related quality of life for children with cancer
Publisher
An entity responsible for making the resource available
Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Child; Cross-Sectional Studies; Female; Humans; Male; Prognosis; Questionnaires; Severity of Illness Index; Risk Assessment; Psychometrics; Incidence; Sickness Impact Profile; quality of life; adolescent; Non-U.S. Gov't; Research Support; Comparative Study; Nutritional Failure; Age Distribution; Anorexia/diagnosis/epidemiology/psychology/therapy; Cachexia/diagnosis/epidemiology/psychology/therapy; Neoplasms/diagnosis/epidemiology/psychology; Sex Distribution
Creator
An entity primarily responsible for making the resource
Lai JS; Cella D; Peterman A; Barocas J; Goldman S
Description
An account of the resource
BACKGROUND: Anorexia is a common symptom in patients with cancer, which can lead to poor tolerance of treatment and can contribute to cachexia in extreme cases. Children with advanced-stage cancer are especially vulnerable to malnutrition resulting from anorexia and cachexia. Currently, there are no instruments that measure common concerns specifically associated with anorexia and cachexia in children with cancer. The purpose of the current article was to test the psychometric properties of a newly developed pediatric Functional Assessment of Anorexia and Cachexia Therapy (peds-FAACT) for children with cancer. METHODS: Ninety-six patients (ages 7-17 yrs) receiving cancer treatment and their parents were asked to complete the 12-item peds-FAACT. The authors implemented both classical test theory and item response theory to evaluate the agreement between parents and patients, internal consistency and unidimensionality of the scale, and stability of items across subgroups. RESULTS: As a result, a patient-reported six-item scale was recommended as the core measure for all pediatric patients with cancer and four additional peripheral items were recommended for adolescent patients. CONCLUSIONS: The peds-FAACT demonstrated good psychometric properties, differentiated patients with different functional performance status, and was determined to be a useful tool for future clinical trials.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/cncr.21315" target="_blank" rel="noreferrer">10.1002/cncr.21315</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
Adolescent
Age Distribution
Anorexia/diagnosis/epidemiology/psychology/therapy
Backlog
Barocas J
Cachexia/diagnosis/epidemiology/psychology/therapy
Cancer
Cella D
Child
Comparative Study
Cross-sectional Studies
Female
Goldman S
Humans
Incidence
Journal Article
Lai JS
Male
Neoplasms/diagnosis/epidemiology/psychology
Non-U.S. Gov't
Nutritional Failure
Peterman A
Prognosis
Psychometrics
Quality Of Life
Questionnaires
Research Support
Risk Assessment
Severity Of Illness Index
Sex Distribution
Sickness Impact Profile
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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/10.1016/s0140-6736(03)12387-2" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0140-6736(03)12387-2</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
Mortality in parents after death of a child in Denmark: A nationwide follow-up study.
Publisher
An entity responsible for making the resource available
Lancet
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Child; Female; Humans; Male; Adult; Follow-Up Studies; Death; Health Status; Longitudinal Studies; Risk Factors; Life Change Events; Time Factors; Incidence; Proportional Hazards Models; Registries; Population Surveillance; adolescent; Preschool; bereavement; infant; cause of death; Denmark/epidemiology; Parents/psychology; Sex Distribution; mortality; SSHRC CURA
Creator
An entity primarily responsible for making the resource
Li J; Precht DH; Mortensen PB; Olsen J
Description
An account of the resource
BACKGROUND: Little is known about the effect of parental bereavement on physical health. We investigated whether the death of a child increased mortality in parents. METHODS: We undertook a follow-up study based on national registers. From 1980 to 1996, we enrolled 21062 parents in Denmark who had a child who had died (exposed cohort), and 293745 controls--ie, parents whose children were alive, and whose family structure matched that of the exposed cohort. Natural deaths were defined with ICD8 codes 0000-7969 and ICD10 codes A00-R99, and unnatural deaths with codes 8000-9999 and V01-Y98. We used Cox's proportional-hazards regression models to assess the mortality rate of parents up to 18 years after bereavement. FINDINGS: We observed an increased overall mortality rate in mothers whose child had died (hazards ratio 1.43, 95% CI 1.24-1.64; p<0.0001). An excess mortality from natural causes (1.44, 1.15-1.78; p<0.0001) was noted in mothers only during the 10th-18th year of follow-up. Mothers had increased mortality rates from unnatural causes throughout follow-up, with the highest rate recorded during the first 3 years (3.84, 2.48-5.88; p<0.0001). Bereaved fathers had only an early excess mortality from unnatural causes (1.57, 1.06-2.32; p=0.04). Mothers who lost a child due to an unnatural death or an unexpected death had a hazard ratio of 1.72 (1.38-2.15; p=0.0040) and 1.67 (1.37-2.03; p=0.0037), respectively. INTERPRETATION: The death of a child is associated with an overall increased mortality from both natural and unnatural causes in mothers, and an early increased mortality from unnatural causes in fathers.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0140-6736(03)12387-2" target="_blank" rel="noreferrer">10.1016/s0140-6736(03)12387-2</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
Adolescent
Adult
Backlog
Bereavement
Cause Of Death
Child
Death
Denmark/epidemiology
Female
Follow-up Studies
Health Status
Humans
Incidence
Infant
Journal Article
Lancet
Li J
Life Change Events
Longitudinal Studies
Male
Mortality
Mortensen PB
Olsen J
Parents/psychology
Population Surveillance
Precht DH
Preschool
Proportional Hazards Models
Registries
Risk Factors
Sex Distribution
SSHRC CURA
Time Factors
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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/10.1016/s1054-139x(01)00253-1" target="_blank" rel="noreferrer">http://doi.org/10.1016/s1054-139x(01)00253-1</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Health care information sources for adolescents: age and gender differences on use, concerns, and needs
Publisher
An entity responsible for making the resource available
The Journal Of Adolescent Health : Official Publication Of The Society For Adolescent 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; United States; Adolescent Psychology; Attitude to Health; adolescent; Adolescent Health Services/utilization; Age Distribution; Sex Distribution; Adolescent Behavior/ethnology; Confidentiality/psychology; Health Services Accessibility/standards/trends
Creator
An entity primarily responsible for making the resource
Ackard DM; Neumark-Sztainer D
Description
An account of the resource
OBJECTIVES: To assess adolescents' sources of health care information, explore beliefs about topics which health care providers should address and about those which have been addressed, and identify topics that are embarrassing for adolescents to discuss with providers. METHODS: Participants included a nationally representative sample of 3153 boys and 3575 girls in 5th through 12th grades who completed the Commonwealth Fund survey. Data were analysed by inspection of percentages and bivariate associations. RESULTS: Boys (41.7%) and girls (58.4%) identified their mother as the primary resource for health care information. Younger boys and girls (grades five and six) were more likely than older boys and girls (grades 10 to 12) to ask their mother first about health issues (boys 54.4% vs. 35.2%; girls 71.7% vs. 46.4%). Doctors, nurses, or school nurses were also frequently identified as the first person asked about health issues (boys 23.9%, girls 18.2%). Most adolescents indicated that providers should address the following topics: drugs (65.0%); smoking (58.5%); sexually transmitted diseases (61.4%); alcohol use (56.2%); and good eating behaviors (56.8%). However, fewer adolescents reported that providers have actually discussed these issues with them; only 23.1% to 34.2% of adolescents reported having discussed the first four topics with them. Many youth noted that it would be embarrassing for them to discuss these issues with their providers. CONCLUSIONS: Adolescents report that parents and health care providers are key sources of health-related information. Although adolescents may be embarrass having discussions with their health care providers, adolescents do believe that these topics should be addressed. Adolescents' embarrassment about discussing sensitive health topics highlights the importance of providers initiating and facilitating these discussions.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s1054-139x(01)00253-1" target="_blank" rel="noreferrer">10.1016/s1054-139x(01)00253-1</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2001
Ackard DM
Adolescent
Adolescent Behavior/ethnology
Adolescent Health Services/utilization
Adolescent Psychology
Age Distribution
Attitude To Health
Backlog
Child
Confidentiality/psychology
Female
Health Services Accessibility/standards/trends
Humans
Journal Article
Male
Neumark-Sztainer D
Sex Distribution
The Journal Of Adolescent Health : Official Publication Of The Society For Adolescent Medicine
United States
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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
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URL Address
<a href="http://doi.org/10.1111/j.1469-8749.1997.tb07358.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1469-8749.1997.tb07358.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
Status epilepticus in children: aetiology, treatment, and outcome
Publisher
An entity responsible for making the resource available
Developmental Medicine & Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
1997
Subject
The topic of the resource
Child; Female; Male; Prevalence; Follow-Up Studies; Treatment Outcome; Risk Factors; Time Factors; Chi-Square Distribution; Anticonvulsants; Drug Administration Schedule; Anesthetics; Preschool; Non-U.S. Gov't; infant; retrospective studies; Human; Age Distribution; Electroencephalography; Sex Distribution; Neuropsychological Tests; Support; Adolescence; Shock; Status Epilepticus/dt [Drug Therapy]; Status Epilepticus/et [Etiology]; Barbiturates/ad [Administration & Dosage]; Diazepam/ad [Administration & Dosage]; Encephalitis/co [Complications]; Intravenous/ad [Administration & Dosage]; Meningitis; Nervous System Diseases/ep [Epidemiology]; Septic/co [Complications]; Status Epilepticus/di [Diagnosis]; Status Epilepticus/ep [Epidemiology]; Streptococcal Infections/co [Complications]; Viral/co [Complications]
Creator
An entity primarily responsible for making the resource
Eriksson KJ; Koivikko MJ
Description
An account of the resource
This retrospective study includes 65 children treated for status epilepticus at Tampere University Hospital in Finland. Aetiology of the condition, effectiveness of the treatment protocol, including short barbiturate anaesthesia to prevent prolonged status epilepticus episodes, and neurological outcome were evaluated. Symptomatic aetiology was present in 40% of status epilepticus episodes, and 37% of episodes were induced by fever. Neurological sequelae secondary to status epilepticus were identified in 15% of the cases and subsequent epilepsy in 23% during the mean follow-up time of 3.6 years. There were no status epilepticus-related deaths. The cut-off point of status epilepticus duration for significant risk for permanent neurological sequelae was 2 hours. Our treatment protocol, including short barbiturate anaesthesia in refractory cases, was able to abort status epilepticus in less than 2 hours in 75% of cases. We conclude that early and prompt use of barbiturate anaesthesia should be encouraged, and may explain our low morbidity figures.
1997
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1469-8749.1997.tb07358.x" target="_blank" rel="noreferrer">10.1111/j.1469-8749.1997.tb07358.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
1997
Adolescence
Age Distribution
Anesthetics
Anticonvulsants
Backlog
Barbiturates/ad [Administration & Dosage]
Chi-Square Distribution
Child
Developmental Medicine & Child Neurology
Diazepam/ad [Administration & Dosage]
Drug Administration Schedule
Electroencephalography
Encephalitis/co [Complications]
Eriksson KJ
Female
Follow-up Studies
Human
Infant
Intravenous/ad [Administration & Dosage]
Journal Article
Koivikko MJ
Male
Meningitis
Nervous System Diseases/ep [Epidemiology]
Neuropsychological Tests
Non-U.S. Gov't
Preschool
Prevalence
Retrospective Studies
Risk Factors
Septic/co [Complications]
Sex Distribution
Shock
Status Epilepticus/di [Diagnosis]
Status Epilepticus/dt [Drug Therapy]
Status Epilepticus/ep [Epidemiology]
Status Epilepticus/et [Etiology]
Streptococcal Infections/co [Complications]
Support
Time Factors
Treatment Outcome
Viral/co [Complications]
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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://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=11087278" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=11087278</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
Effect of severity of disability on survival in north east England cerebral palsy cohort
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Female; infant; Male; Survival Rate; Cohort Studies; Prognosis; Risk Factors; Birth Weight; Non-U.S. Gov't; Newborn; cause of death; Human; Life Expectancy; Sex Distribution; Life Style; Support; England/epidemiology; Disability Evaluation; Cerebral Palsy/mortality
Creator
An entity primarily responsible for making the resource
Hutton JL; Colver AF; Mackie PC
Description
An account of the resource
AIMS: To investigate the effect of motor and cognitive disabilities on the survival of people on the North of England Collaborative Cerebral Palsy Survey, and compare this with other published results. METHODS: The cerebral palsy cohort consists of 1960-1990 births in Northumberland, Newcastle, and North Tyneside health districts. Survival and cause of death were analysed in relation to data on birth, disabilities, and a unique measure of the impact of disability. RESULTS: Disability strongly influences survival. More than a third of those with a severe disability die before age 30. Fewer than a third of deaths are attributed to cerebral palsy on death certificates. Of those with severe cognitive disability, 63% live to age 35 (58% with severe ambulatory disability and 53% with severe manual disability), whereas at least 98% without severe disabilities live to age 35. The Lifestyle Assessment Score (LAS) allows a finer categorisation of impact of disability, and is strongly associated with survival: a ten point increase in LAS is associated with a doubling of the hazard rate. People who had LAS of at least 70, and had survived to age 5 have a 39% chance of dying before age 35. CONCLUSIONS: The majority of people with cerebral palsy attain adulthood. There appears to be more variation in survival rates associated with severe disability between regions of England, than between north east England, British Columbia, and California. Instantaneous risks of dying vary widely between England and California. This variation is not obviously attributable to differing rates of severe disability.
2000
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
2000
Archives of Disease in Childhood
Backlog
Birth Weight
Cause Of Death
Cerebral Palsy/mortality
Cohort Studies
Colver AF
Disability Evaluation
England/epidemiology
Female
Human
Hutton JL
Infant
Journal Article
Life Expectancy
Life Style
Mackie PC
Male
Newborn
Non-U.S. Gov't
Prognosis
Risk Factors
Sex Distribution
Support
Survival Rate