1
40
3
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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.
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URL Address
<a href="http://doi.org/10.1186/1477-7525-5-43" target="_blank" rel="noreferrer">http://doi.org/10.1186/1477-7525-5-43</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
Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales
Publisher
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Health And Quality Of Life Outcomes
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Child; Female; Humans; Male; Age Factors; Severity of Illness Index; Longitudinal Studies; Self Disclosure; Proxy; Case-Control Studies; World Health; Sickness Impact Profile; adolescent; Preschool; Quality of Life/psychology; Cluster Analysis; Psychometrics/instrumentation; Disabled Children/psychology; Chronic Disease/classification/epidemiology/psychology; Pediatrics/instrumentation
Creator
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Varni JW; Limbers CA; Burwinkle TM
Description
An account of the resource
BACKGROUND: Advances in biomedical science and technology have resulted in dramatic improvements in the healthcare of pediatric chronic conditions. With enhanced survival, health-related quality of life (HRQOL) issues have become more salient. The objectives of this study were to compare generic HRQOL across ten chronic disease clusters and 33 disease categories/severities from the perspectives of patients and parents. Comparisons were also benchmarked with healthy children data. METHODS: The analyses were based on over 2,500 pediatric patients from 10 physician-diagnosed disease clusters and 33 disease categories/severities and over 9,500 healthy children utilizing the PedsQL 4.0 Generic Core Scales. Patients were recruited from general pediatric clinics, subspecialty clinics, and hospitals. RESULTS: Pediatric patients with diabetes, gastrointestinal conditions, cardiac conditions, asthma, obesity, end stage renal disease, psychiatric disorders, cancer, rheumatologic conditions, and cerebral palsy self-reported progressively more impaired overall HRQOL than healthy children, respectively, with medium to large effect sizes. Patients with cerebral palsy self-reported the most impaired HRQOL, while patients with diabetes self-reported the best HRQOL. Parent proxy-reports generally paralleled patient self-report, with several notable differences. CONCLUSION: The results demonstrate differential effects of pediatric chronic conditions on patient HRQOL across diseases clusters, categories, and severities utilizing the PedsQL 4.0 Generic Core Scales from the perspectives of pediatric patients and parents. The data contained within this study represents a larger and more diverse population of pediatric patients with chronic conditions than previously reported in the extant literature. The findings contribute important information on the differential effects of pediatric chronic conditions on generic HRQOL from the perspectives of children and parents utilizing the PedsQL 4.0 Generic Core Scales. These findings with the PedsQL have clinical implications for the healthcare services provided for children with chronic health conditions. Given the degree of reported impairment based on PedsQL scores across different pediatric chronic conditions, the need for more efficacious targeted treatments for those pediatric patients with more severely impaired HRQOL is clearly and urgently indicated.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/1477-7525-5-43" target="_blank" rel="noreferrer">10.1186/1477-7525-5-43</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
2007
Adolescent
Age Factors
Backlog
Burwinkle TM
Case-Control Studies
Child
Chronic Disease/classification/epidemiology/psychology
Cluster Analysis
Disabled Children/psychology
Female
Health And Quality Of Life Outcomes
Humans
Journal Article
Limbers CA
Longitudinal Studies
Male
Pediatrics/instrumentation
Preschool
Proxy
Psychometrics/instrumentation
Quality Of Life/psychology
Self Disclosure
Severity Of Illness Index
Sickness Impact Profile
Varni JW
World Health
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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/10.1089/jpm.2006.9.716" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2006.9.716</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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The Seattle Pediatric Palliative Care Project: effects on family satisfaction and health-related quality of life
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
2006
Subject
The topic of the resource
Child; Female; Humans; Male; Physician-Patient Relations; Family; Adult; Questionnaires; Communication; Program Development; Washington; Personal Satisfaction; quality of life; adolescent; Preschool; Palliative Care/organization & administration; decision making; Neoplasms/therapy; Nervous System Diseases/therapy
Creator
An entity primarily responsible for making the resource
Hays RM; Valentine J; Haynes G; Geyer JR; Villareale N; McKinstry B; Varni JW; Churchill SS
Description
An account of the resource
PURPOSE: This paper presents the components of a pediatric palliative care demonstration program implemented in Seattle during the period 1999-2001. It reports findings from the evaluation of quality of life and family satisfaction among enrolled participants. The program was designed to enhance patient-provider communication using the Decision-making Tool (DMT) and experimented with co-management by clinicians and insurers to support decision making in advanced serious pediatric illness. DESIGN: The project design consisted of ethical decision-making, provider education, and flexible administration of health benefits through co-case management between insurers and care providers. The evaluation study design is a non-experimental pretest, posttest design comparison of pediatric quality of life and family satisfaction at program entry with repeated measures at 3 months post-program entry. Quality of life was measured with parent proxy reports of health-related quality of life using the PedsQL() Version 4.0, and family satisfaction was measured with a 31-item self-administered questionnaire designed by project staff. RESULTS: Forty-one patients ranging in age from infancy to 22 years old were enrolled in the program over a 2-year period. Parents consented to participate in the evaluation study. Thirty one specific diagnoses were represented in the patient population; 34% were some form of cancer. Improvements in health-related quality of life over baseline were observed for 21 matched pairs available for analysis in each domain of health-related quality of life; positive changes in reports of emotional well-being were statistically significant. Improvements over baseline in 14 of 31 family satisfaction items were statistically significant. CONCLUSIONS: Pediatric palliative care services that focus on effective communication, decision support, and co-case management with insurers can improve aspects of quality of life and family satisfaction.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2006.9.716" target="_blank" rel="noreferrer">10.1089/jpm.2006.9.716</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
2006
Adolescent
Adult
Backlog
Child
Churchill SS
Communication
Decision Making
Family
Female
Geyer JR
Haynes G
Hays RM
Humans
Journal Article
Journal of Palliative Medicine
Male
McKinstry B
Neoplasms/therapy
Nervous System Diseases/therapy
Palliative Care/organization & Administration
Personal Satisfaction
Physician-patient Relations
Preschool
Program Development
Quality Of Life
Questionnaires
Valentine J
Varni JW
Villareale N
Washington
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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/10.1023/b:qure.0000015305.44181.e3" target="_blank" rel="noreferrer">http://doi.org/10.1023/b:qure.0000015305.44181.e3</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
Validation of the German version of the Pediatric Quality of Life Inventory (PedsQL) in childhood cancer patients off treatment and children with epilepsy
Publisher
An entity responsible for making the resource available
Quality of Life Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
PedPal Lit; Adolescent Child Child; physiopathology; methods Psychometrics; psychology Germany; psychology Parents Pediatrics; psychology Self Assessment (Psychology)Sickness Impact Profile Translating United States; and test the usefulness of the instrument in other clinical populations and healthy children.; epidemiology Humans Neoplasms; instrumentation Quality of Life; Preschool Comparative Study Epilepsy; score distributions tended to be skewed toward higher HRQL; sensitivity and responsiveness; the German PedsQL seems to be equivalent to the original version. Future methodologic research should evaluate construct validity
Creator
An entity primarily responsible for making the resource
Felder-Puig R; Frey E; Proksch K; Varni JW; Gadner H; Topf R
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1023/b:qure.0000015305.44181.e3" target="_blank" rel="noreferrer">10.1023/b:qure.0000015305.44181.e3</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
Description
An account of the resource
2004
2004
Adolescent Child Child
and test the usefulness of the instrument in other clinical populations and healthy children.
Backlog
epidemiology Humans Neoplasms
Felder-Puig R
Frey E
Gadner H
instrumentation Quality of Life
Journal Article
methods Psychometrics
PedPal Lit
physiopathology
Preschool Comparative Study Epilepsy
Proksch K
psychology Germany
psychology Parents Pediatrics
psychology Self Assessment (Psychology)Sickness Impact Profile Translating United States
Quality of Life Research
score distributions tended to be skewed toward higher HRQL
sensitivity and responsiveness
the German PedsQL seems to be equivalent to the original version. Future methodologic research should evaluate construct validity
Topf R
Varni JW