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40
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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
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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
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.2006.9.1310" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2006.9.1310</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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Advanced illness index: Predictive modeling to stratify elders using self-report data
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
Female; Humans; Male; Terminally Ill; Aged; Severity of Illness Index; Risk Assessment; Self Disclosure; Forecasting; 80 and over; Models; retrospective studies; Health Surveys; Theoretical
Creator
An entity primarily responsible for making the resource
Brody KK; Perrin NA; Dellapenna R
Description
An account of the resource
OBJECTIVES: Develop a prediction model to identify persons who have an increased risk of dying within the next 36 months, in order to focus additional resources and assessment in areas related to advanced care planning. DESIGN: Retrospective study with a 3-year observation period. SETTING: Integrated, not-for-profit managed care organization. Participants: Beneficiaries aged 65-105 responding to an annual survey (n = 4888). MEASUREMENTS: Survey instrument includes physical function, geriatric syndromes, health care utilization, special equipment use, self-care deficits, caregiving responsibilities, and general health problems. RESULTS: An 11-variable model changed the baseline chi2 from 315.71 (df = 1) to 742.511 (df = 11). The percent of subjects correctly classified was 74.3% and the negative predictive value was 92.2%. CONCLUSION: Advanced Illness Index (AII) model is stable. Characteristic variables used are not easily reversed: the 1997 cohort classified as at-risk consistently remained at risk or died in the subsequent years (1998, 92%; and 1999, 96%) and 92% of those not at-risk survived the next 36 months. Persons at high risk should at a minimum be made aware of the types of integrated home and community-based services available to them should it be needed. They also should be targeted for elicitation of treatment preferences, values, designation of health care proxy, planning, and advanced care directives.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2006.9.1310" target="_blank" rel="noreferrer">10.1089/jpm.2006.9.1310</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
80 And Over
Aged
Backlog
Brody KK
Dellapenna R
Female
Forecasting
Health Surveys
Humans
Journal Article
Journal of Palliative Medicine
Male
Models
Perrin NA
Retrospective Studies
Risk Assessment
Self Disclosure
Severity Of Illness Index
Terminally Ill
Theoretical
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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/10.3109/08880019309029488" target="_blank" rel="noreferrer">http://doi.org/10.3109/08880019309029488</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
Children with cancer talk about their own death with their families
Publisher
An entity responsible for making the resource available
Pediatric Hematology And Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
1993
Subject
The topic of the resource
Child; Female; Humans; Male; Parent-Child Relations; Attitude of Health Personnel; Questionnaires; Attitude to Death; Communication; Truth Disclosure; Child Psychology; Self Disclosure; Sibling Relations; Family Health; Preschool; Non-U.S. Gov't; Research Support; patient care team; Neoplasms/psychology
Creator
An entity primarily responsible for making the resource
Goldman A; Christie D
Description
An account of the resource
In this study we looked at children dying from progressive malignant diseases and their families, to see whether they discussed the child's impending death together. We also looked at what factors might influence this. We questioned staff in the oncology department about their attitude to an open approach in talking about death and their views of how often it occurred. Analysis of 31 children over 3 years old and their families showed that the approach of death was mutually acknowledged by six families (19%); seven (23%) children were felt to know but chose not to discuss death; in two (6%) families, discussion with the child was blocked; nine (29%) children died unaware, and in seven (23%) families, what the children felt was unknown. Staff members (22) all advocated an open, honest approach in talking to children about their death but varied widely and overestimated how often they believed discussion of the child's impending death occurred (range, 10%-80%; median, 45%).
1993
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3109/08880019309029488" target="_blank" rel="noreferrer">10.3109/08880019309029488</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
1993
Attitude Of Health Personnel
Attitude To Death
Backlog
Child
Child Psychology
Christie D
Communication
Family Health
Female
Goldman A
Humans
Journal Article
Male
Neoplasms/psychology
Non-U.S. Gov't
Parent-child Relations
Patient Care Team
Pediatric Hematology And Oncology
Preschool
Questionnaires
Research Support
Self Disclosure
Sibling Relations
Truth Disclosure