1
40
151
-
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/10.1001/jama.298.15.1787" target="_blank" rel="noreferrer">http://doi.org/10.1001/jama.298.15.1787</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
Adult cystic fibrosis
Publisher
An entity responsible for making the resource available
Jama
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Humans; Male; Middle Aged; Adolescent Transitions; Cystic Fibrosis/diagnosis/epidemiology/physiopathology/therapy
Creator
An entity primarily responsible for making the resource
Boyle MP
Description
An account of the resource
Cystic fibrosis is a multisystem disease characterized primarily by chronic pulmonary infection and bronchiectasis, pancreatic exocrine impairment, and elevated sweat chloride. In the last 4 decades, new treatment strategies and aggressive nutritional management have resulted in a significant increase in expected survival, with median predicted survival in cystic fibrosis now to older than 35 years. This increase in predicted survival has also been aided by a greater appreciation of the potential variability in the presentation and severity of cystic fibrosis, resulting in identification of a growing number of mild cases. As it is estimated that within the next decade more than half of all individuals with cystic fibrosis will be aged 18 years or older, adult medicine caregivers are increasingly likely to encounter patients with cystic fibrosis and be exposed to their unique medical management.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jama.298.15.1787" target="_blank" rel="noreferrer">10.1001/jama.298.15.1787</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
2007
Adolescent Transitions
Backlog
Boyle MP
Cystic Fibrosis/diagnosis/epidemiology/physiopathology/therapy
Humans
JAMA
Journal Article
Male
Middle Aged
-
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/pbc.21460" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.21460</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
Do as I say or die: compliance in adolescents with cancer
Publisher
An entity responsible for making the resource available
Pediatric Blood & Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Adolescent Transitions; cancer; Adolescents; Compliance
Creator
An entity primarily responsible for making the resource
Windebank KP; Spinetta J
Description
An account of the resource
Adolescence is a time of great physical change and maturing brain function. This leads to adolescents establishing independence and coming to terms with the implications of their own actions. Not surprisingly, this phase is characterized by experimentation with both constructive and destructive behavior. Studies in many areas of chronic illness have shown that adolscents frequently neglect their care and revolt against the rules established during their childhood. It is therefore to be expected that teenagers diagnosed with a life threatening illness, such as cancer, may on occasion not fully comply with their therapy. They way forward includes improving communication and fully involving these young persons in their treatment planning, thereby moving from compliance to concordance. Additional improvements should be sought in medication, early recognition and support of familial or social problems, and using a specific adolescent multidisciplinary team. Research should not be limited to clinical trials.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.21460" target="_blank" rel="noreferrer">10.1002/pbc.21460</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
Adolescent Transitions
Adolescents
Backlog
Cancer
Compliance
Journal Article
Pediatric Blood & Cancer
Spinetta J
Windebank KP
-
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/ppul.20650" target="_blank" rel="noreferrer">http://doi.org/10.1002/ppul.20650</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
The challenge of asthma in adolescence
Publisher
An entity responsible for making the resource available
Pediatric Pulmonology
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Humans; adolescent; Adolescent Transitions; Asthma/diagnosis/mortality/therapy
Creator
An entity primarily responsible for making the resource
de Benedictis D; Bush A
Description
An account of the resource
The adolescents with asthma are a distinct group of patients with different problems and needs compared to children and adults. Specific issues of asthma in adolescence are the variability of the clinical spectrum, the presence of particular risk factors for the persistence of symptoms, underdiagnosis and undertreatment of the disease. Refusal of the sick role, denial of symptoms, carelessness about dangerous inhalation exposure, erratic self-medication, overexertion without taking precautions against exercise-induced asthma, and a poor relationship between patients, their families, and often doctors are the main obstacles to successful management of asthma in this critical age. There are also major problems of compliance for these patients. The goal of optimal quality of life will be achieved only if the physician thoroughly understands the adolescent's needs and provides optimal care.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/ppul.20650" target="_blank" rel="noreferrer">10.1002/ppul.20650</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
Adolescent Transitions
Asthma/diagnosis/mortality/therapy
Backlog
Bush A
de Benedictis D
Humans
Journal Article
Pediatric Pulmonology
-
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/bf03000186" target="_blank" rel="noreferrer">http://doi.org/10.1007/bf03000186</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
The role of partner relationships in the young person's adherence to the diabetes self-care regime
Publisher
An entity responsible for making the resource available
International Journal Of Behavioral Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Cross-Sectional Studies; Female; Humans; Male; Adult; Interpersonal Relations; Questionnaires; Self Care; adolescent; Adolescent Transitions; Diabetes Mellitus; Patient Compliance/statistics & numerical data; Sexual Partners; Type 1/drug therapy/psychology
Creator
An entity primarily responsible for making the resource
Gillibrand R; Stevenson J
Description
An account of the resource
BACKGROUND: This study investigated the role of partner relationships in the young person's experience of diabetes. It was predicted that those people reporting a better quality relationship would report greater social support and better diabetes management. METHOD: Fifty young adults with diabetes and their spouse/partner completed web-based questionnaires. RESULTS: A better quality relationship did not correlate with high reported levels of social support or with better diabetes management. Path analysis demonstrated, however, that for males with diabetes high reported quality of relationship predicted better diabetes management. CONCLUSIONS: Relationship quality does not generally predict better diabetes management; however, there may be a unique feature to good relationships that support men's diabetes self-care.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/bf03000186" target="_blank" rel="noreferrer">10.1007/bf03000186</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
Adolescent Transitions
Adult
Backlog
Cross-sectional Studies
Diabetes Mellitus
Female
Gillibrand R
Humans
International Journal Of Behavioral Medicine
Interpersonal Relations
Journal Article
Male
Patient Compliance/statistics & numerical data
Questionnaires
Self Care
Sexual Partners
Stevenson J
Type 1/drug therapy/psychology
-
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/s00246-009-9442-1" target="_blank" rel="noreferrer">http://doi.org/10.1007/s00246-009-9442-1</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
Attitude toward and current practice of transfer and transition of adolescents with congenital heart disease in the United States of America and Europe
Publisher
An entity responsible for making the resource available
Pediatric Cardiology
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Child; Humans; United States; Adult; Attitude of Health Personnel; Questionnaires; Continuity of Patient Care; Europe; adolescent; Adolescent Transitions; retrospective studies; Heart Defects; Congenital/therapy; Patient Transfer/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Hilderson D; Saidi AS; Van Deyk K; Verstappen A; Kovacs AH; Fernandes SM; Canobbio MM; Fleck D; Meadows A; Linstead R; Moons P
Description
An account of the resource
The objective of this study was to explore the current practice and attitudes of pediatric cardiologists in the United States and Europe on the transfer and transition of children with congenital heart disease (CHD). A survey among pediatric cardiology programs in the United States and Europe was undertaken. Sixty-nine centers completed and returned the 61-item questionnaire that was specifically devised for this survey. Of 69 participating centers, 74% reported that they transfer their patients to adult-focused care. When a center transfers its patients, 80% transfer them to a formalized Adult Congenital Heart Disease Program. The median age of transfer is 18 years. Comorbidities, pregnancy, and patient/family request to leave pediatric cardiology were identified as initiators for transfer. Complexity of the heart defect was relatively less important when deciding whether to transfer patients. Only one-third of the centers that transfer their patients provide a structured preparation for patients and family. Development of a formal transition program is planned at 59% of the centers that transfer patients. In conclusion, timely transfer and a structured transition process of children with CHD are not implemented in all pediatric cardiology programs. Health-care providers working in pediatric cardiology should make their transfer policies explicit and transition programs ought to be developed.
2009
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00246-009-9442-1" target="_blank" rel="noreferrer">10.1007/s00246-009-9442-1</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
2009
Adolescent
Adolescent Transitions
Adult
Attitude Of Health Personnel
Backlog
Canobbio MM
Child
Congenital/therapy
Continuity Of Patient Care
Europe
Fernandes SM
Fleck D
Heart Defects
Hilderson D
Humans
Journal Article
Kovacs AH
Linstead R
Meadows A
Moons P
Patient Transfer/statistics & numerical data
Pediatric Cardiology
Questionnaires
Retrospective Studies
Saidi AS
United States
Van Deyk K
Verstappen A
-
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/s11606-007-0177-5" target="_blank" rel="noreferrer">http://doi.org/10.1007/s11606-007-0177-5</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
Toward youth friendly services: a survey of young people in primary care
Publisher
An entity responsible for making the resource available
Journal Of General Internal Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Cross-Sectional Studies; Female; Humans; Male; Physician-Patient Relations; Adult; Health Care Surveys; Age Factors; Needs Assessment; Patient Satisfaction; adolescent; Adolescent Transitions; Patient Acceptance of Health Care/statistics & numerical data; Adolescent Health Services/utilization; Health Services Needs and Demand/classification/statistics & numerical data; Primary Health Care/utilization
Creator
An entity primarily responsible for making the resource
Haller DM; Sanci LA; Patton GC; Sawyer SM
Description
An account of the resource
BACKGROUND: The World Health Organization encourages the development of youth friendly services, yet little is known on how youth currently present in general practice. OBJECTIVE: To describe the perspectives, expectations, and service receipt of young people presenting to family doctors to inform the development of youth friendly services. DESIGN: Cross-sectional survey. PARTICIPANTS AND MEASUREMENTS: Consecutive young people attending 26 randomly selected practices were recruited in the waiting rooms. Standardized instruments were used to interview them before their consultation. RESULTS: Of 501 young people who were approached, 450 participated (91% participation rate). Most had respiratory (26%) or dermatological complaints (18%). When asked to assess their health status, 59% perceived they had neither a physical nor a mental illness. However, 43% stated they had fears about their health problem and 1 in 5 feared it could be life-threatening. Although only 10% presented with psychological complaints, 24% perceived they currently had a mental illness. The most common expectations were treatment (50%) and good communication (42%). Most youth were prescribed medication (60%), but 40% of those who received a prescription had not expected to receive a treatment. A follow-up appointment was offered to 57% of participants. CONCLUSIONS: This study identifies a gap between young people's perception of illness and their presentations to family doctors. It also highlights unexpected fears, and a mismatch between expectations and service receipt. These findings have implications for family medicine training and for clinical practice. They should inform the development of youth friendly services.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s11606-007-0177-5" target="_blank" rel="noreferrer">10.1007/s11606-007-0177-5</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
2007
Adolescent
Adolescent Health Services/utilization
Adolescent Transitions
Adult
Age Factors
Backlog
Cross-sectional Studies
Female
Haller DM
Health Care Surveys
Health Services Needs and Demand/classification/statistics & numerical data
Humans
Journal Article
Journal Of General Internal Medicine
Male
Needs Assessment
Patient Acceptance Of Health Care/statistics & Numerical Data
Patient Satisfaction
Patton GC
Physician-patient Relations
Primary Health Care/utilization
Sanci LA
Sawyer SM
-
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/s11606-008-0716-8" target="_blank" rel="noreferrer">http://doi.org/10.1007/s11606-008-0716-8</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
Comfort of general internists and general pediatricians in providing care for young adults with chronic illnesses of childhood
Publisher
An entity responsible for making the resource available
Journal Of General Internal Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Cross-Sectional Studies; Female; Humans; Male; Young Adult; Adult; Attitude of Health Personnel; Aged; Middle Aged; adolescent; Adolescent Transitions; Pediatrics/methods/trends; Chronic Disease/psychology/therapy; Family Practice/methods/trends; Physician's Role/psychology
Creator
An entity primarily responsible for making the resource
Okumura MJ; Heisler M; Davis MM; Cabana MD; Demonner S; Kerr EA
Description
An account of the resource
BACKGROUND: As an increasing number of patients with chronic conditions of childhood survive to adulthood, experts recommend that young adults with chronic conditions transfer from child-focused to adult-focused primary care. Little, however, is known about how comfortable physicians are caring for this population. OBJECTIVES: To assess the comfort of general internists and general pediatricians in treating young adult patients with chronic illnesses originating in childhood as well as the factors associated with comfort. PARTICIPANTS: In a random sample, 1288 of 2434 eligible US general internists and pediatricians completed a mailed survey (response rate = 53%). METHODS: We measured respondents' comfort level in providing primary care for a patient with sickle cell disease (SCD) or cystic fibrosis (CF). We also measured levels of disease familiarity, training and subspecialty support, as well as individual physician characteristics. RESULTS: Fifteen percent of general internists reported being comfortable as the primary care provider for adults with CF and 32% reported being comfortable providing primary care for adults with SCD, compared with 38% of pediatricians for CF (p 0.05). Less than half of general internists felt that their specialty should take primary care responsibility for adult patients with CF and SCD. CONCLUSIONS: A majority of general internists and pediatricians are not comfortable providing primary care for young adults with chronic illnesses of childhood origin, such as CF and SCD. Efforts to increase treatment comfort among providers may help with the transition to adult-focused care for the growing numbers of young adults with complex chronic conditions.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s11606-008-0716-8" target="_blank" rel="noreferrer">10.1007/s11606-008-0716-8</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
Adolescent Transitions
Adult
Aged
Attitude Of Health Personnel
Backlog
Cabana MD
Chronic Disease/psychology/therapy
Cross-sectional Studies
Davis MM
Demonner S
Family Practice/methods/trends
Female
Heisler M
Humans
Journal Article
Journal Of General Internal Medicine
Kerr EA
Male
Middle Aged
Okumura MJ
Pediatrics/methods/trends
Physician's Role/psychology
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/10.1016/j.adolescence.2008.03.001" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.adolescence.2008.03.001</a>
Dublin Core
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Title
A name given to the resource
Identity-in-context is not yet identity development-in-context
Publisher
An entity responsible for making the resource available
Journal Of Adolescence
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Adolescent Transitions
Creator
An entity primarily responsible for making the resource
Bosma H; Kunnen ES
Description
An account of the resource
In this discussion, we summarize the main aspects of the research presented in the papers and discuss what we see as their strong points. To analyze recent developments in identity research, we compared the present issue with the special issue of the Journal of Adolescence in 1996 on 'Identity Development in Context'. In that issue it was concluded that further research is necessary to "detail the ways in which contextual variables may interact both with one another as well as with individual personality variables to determine the course of the identity formation process". In the papers in this issue, the influence of the context has received much more attention than 20 years ago. However, they still have serious limitations with regard to the study of the developmental process. Not more than one study uses a longitudinal design. To stimulate research into developmental processes we conclude with a plea for longitudinal studies over long periods, with enough measurement points to distinguish between different patterns, and for more conceptual attention for what identity development is about.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.adolescence.2008.03.001" target="_blank" rel="noreferrer">10.1016/j.adolescence.2008.03.001</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
Backlog
Bosma H
Journal Article
Journal Of Adolescence
Kunnen ES
-
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.ahj.2008.08.029" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.ahj.2008.08.029</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
Planning the specialized care of adult congenital heart disease patients: from numbers to guidelines
Publisher
An entity responsible for making the resource available
American Heart Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Humans; Adult; Guidelines as Topic; Adolescent Transitions; Heart Diseases/congenital/epidemiology/therapy; Hospital Planning/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Marelli AJ; Therrien J; Mackie AS; Ionescu-Ittu R; Pilote L
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ahj.2008.08.029" target="_blank" rel="noreferrer">10.1016/j.ahj.2008.08.029</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
Description
An account of the resource
Guidelines published in 2001 recommended 1 regional adult congenital heart disease (ACHD) center per 3 to 10 million population. Our objective was to determine if published guidelines on the numbers of regional ACHD centers are sufficient to meet the needs of adults with congenital heart disease in the general population. Population data were examined to evaluate the recommendations for the number of regional centers. We extrapolated a population prevalence of 4.09 per 1,000 adults corresponding to 847,896 and 87,375 patients with ACHD in the United States and Canada, respectively. We reviewed the information currently available on the numbers of ACHD facilities of any kind indexed to continental populations. We examined the distribution of disease and health services in pediatric and adult populations and examined the evidence for pressure points during the transition process. Published data on 6 of the largest regional ACHD centers were used to model regional center care. We reviewed determinants and recommendations for follow-up in regional centers. We explore 3 scenarios of referral patterns to regional centers, examining their impact of the number of centers required per country population. In conclusion, we demonstrate that 1 regional ACHD center for a population of 2.0 million adults appears to be closer to what is required for improving access to specialized care for patients with ACHD in the United States and Canada.
2009
Adolescent Transitions
Adult
American Heart Journal
Backlog
Guidelines As Topic
Heart Diseases/congenital/epidemiology/therapy
Hospital Planning/statistics & numerical data
Humans
Ionescu-Ittu R
Journal Article
Mackie AS
Marelli AJ
Pilote L
Therrien J
-
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.amjcard.2006.10.054" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.amjcard.2006.10.054</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 resource utilization in adults with congenital heart disease
Publisher
An entity responsible for making the resource available
The American Journal Of Cardiology
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Female; Humans; Male; Adult; Aged; Middle Aged; Length of Stay; Outcome Assessment (Health Care); Severity of Illness Index; Emergency Service; adolescent; Hospital/utilization; Adolescent Transitions; Patient Acceptance of Health Care/statistics & numerical data; Hospitalization/statistics & numerical data; Heart Defects; Age Distribution; Databases; Factual; Ambulatory Care/utilization; Congenital/epidemiology/etiology/pathology/therapy; Health Resources/utilization; Quebec/epidemiology
Creator
An entity primarily responsible for making the resource
Mackie AS; Pilote L; Ionescu-Ittu R; Rahme E; Marelli AJ
Description
An account of the resource
The number of adults with congenital heart disease (CHD) is increasing. However, rates of health care resource utilization in this population are unknown. The objectives of this study were to describe the use of general health care resources in adults with CHD and to examine the impact of CHD severity on resource utilization. The study consisted of adults alive in 1996 who had > or = 1 diagnosis of a CHD lesion conforming to the International Classification of Disease, Ninth Revision, in the physician's claims database of the province of Quebec from 1983 to 2000. From 1996 to 2000, rates of health care utilization were measured. The impact of the severity of CHD on the use of health care resources was determined using multivariate models to adjust for age, gender, Charlson co-morbidity score, and duration of follow-up. The study population consisted of 22,096 adults with CHD (42% men). From 1996 to 2000, 87% received outpatient care from specialists, 68% visited emergency rooms, 51% were hospitalized, and 16% were admitted to critical care units. Patients with severe CHD had higher adjusted rates of outpatient cardiologist care (rate ratio [RR] 2.24, 95% confidence interval [CI] 2.06 to 2.45), emergency department utilization (RR 1.09, 95% CI 1.03 to 1.17), hospitalization (RR 1.30, 95% CI 1.19 to 1.43), and days in critical care (RR 2.12, 95% CI 1.80 to 2.50) than patients with other congenital cardiac lesions. Hospitalization rates were higher than in the general Quebec adult population (RR 2.08, 95% CI 2.00 to 2.17). In conclusion, adults with CHD have high rates of health care resource utilization, particularly those with severe lesions. Appropriate resource allocation is required to serve this growing population.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.amjcard.2006.10.054" target="_blank" rel="noreferrer">10.1016/j.amjcard.2006.10.054</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
2007
Adolescent
Adolescent Transitions
Adult
Age Distribution
Aged
Ambulatory Care/utilization
Backlog
Congenital/epidemiology/etiology/pathology/therapy
Databases
Emergency Service
Factual
Female
Health Resources/utilization
Heart Defects
Hospital/utilization
Hospitalization/statistics & numerical data
Humans
Ionescu-Ittu R
Journal Article
Length Of Stay
Mackie AS
Male
Marelli AJ
Middle Aged
Outcome Assessment (health Care)
Patient Acceptance Of Health Care/statistics & Numerical Data
Pilote L
Quebec/epidemiology
Rahme E
Severity Of Illness Index
The American Journal Of Cardiology
-
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.apmr.2007.03.005" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.apmr.2007.03.005</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
Youth and young adults with cerebral palsy: their use of physician and hospital services
Publisher
An entity responsible for making the resource available
Archives Of Physical Medicine And Rehabilitation
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Female; Humans; Male; Adult; adolescent; Adolescent Transitions; Chronic disease; Hospitalization/statistics & numerical data; Ambulatory Care/utilization; Cerebral Palsy/therapy; Medical/statistics & numerical data; Ontario/epidemiology; Specialties
Creator
An entity primarily responsible for making the resource
Young NL; Gilbert TK; McCormick A; Ayling-Campos A; Boydell K; Law M; Fehlings DL; Mukherjee S; Wedge JH; Williams JI
Description
An account of the resource
OBJECTIVES: To examine patterns of health care utilization among youth and young adults who have cerebral palsy (CP) and to provide information to guide the development of health services for adults who have CP. DESIGN: This study analyzed health insurance data for outpatient physician visits and hospital admissions for a 4-year period. SETTING: Six children's treatment centers in Ontario, Canada. PARTICIPANTS: The sample included 587 youth and 477 adults with CP identified from health records. Youths were 13 to 17 years of age, and adults were 23 to 32 years of age at the end of the data range. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: We computed the annual rates of outpatient physician visits and hospitalizations per 1000 persons and compared these with rates for the general population. RESULTS: Annual rates of outpatient physician visits were 6052 for youth and 6404 for adults with CP, 2.2 times and 1.9 times higher, respectively, than rates for age-matched peers (P<.01). Specialists provided 28.4% of youth visits but only 18.8% of adult visits. Annual hospital admission rates were 180 for youth and 98 for adults with CP, 4.3 times and 10.6 times higher, respectively, than rates for age-matched peers (P<.01). CONCLUSIONS: It appears that youth and adults with CP continue to have complex care needs and rely heavily on the health care system. Comprehensive services are essential to support their health as they move into youth and adulthood. However, there appear to be gaps in the adult health care system, such as limited access to specialist physicians.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.apmr.2007.03.005" target="_blank" rel="noreferrer">10.1016/j.apmr.2007.03.005</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
Adolescent Transitions
Adult
Ambulatory Care/utilization
Archives Of Physical Medicine And Rehabilitation
Ayling-Campos A
Backlog
Boydell K
Cerebral Palsy/therapy
Chronic Disease
Fehlings DL
Female
Gilbert TK
Hospitalization/statistics & numerical data
Humans
Journal Article
Law M
Male
McCormick A
Medical/statistics & numerical data
Mukherjee S
Ontario/epidemiology
Specialties
Wedge JH
Williams JI
Young NL
-
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.apmr.2007.06.001" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.apmr.2007.06.001</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
Perspectives on transitions: rethinking services for children and youth with developmental disabilities
Publisher
An entity responsible for making the resource available
Archives Of Physical Medicine And Rehabilitation
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; Humans; Male; United States; Disability Evaluation; adolescent; Adolescent Transitions; Adolescent Health Services/standards; Developmental Disabilities/rehabilitation; Health Services Needs and Demand/organization & administration
Creator
An entity primarily responsible for making the resource
Rosenbaum P; Stewart D
Description
An account of the resource
Transition to adulthood for youth with developmental disabilities has become an important concern internationally of service providers working with these young people. Reflecting on the useful review by Binks and colleagues in this issue of the Archives, we argue as developmentalists that this is an ideal time to step back from our traditional preoccupation with "treatment" of childhood disability and to reconsider broadly what our goals for intervention ought to be. We invoke the concepts of the International Classification of Functioning, Health and Disability framework and draw on research that taps the voices of young people with disabilities-voices we believe have a lot to tell us about what has and has not worked for them. We suggest that there are unparalleled opportunities to enhance transition to adulthood for young people with developmental disabilities, in part by a feed-forward of the best of childhood services, and to work to prevent many of the difficulties faced by the current generation making this challenging transition.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.apmr.2007.06.001" target="_blank" rel="noreferrer">10.1016/j.apmr.2007.06.001</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
Adolescent Health Services/standards
Adolescent Transitions
Archives Of Physical Medicine And Rehabilitation
Backlog
Child
Developmental Disabilities/rehabilitation
Disability Evaluation
Health Services Needs And Demand/organization & Administration
Humans
Journal Article
Male
Rosenbaum P
Stewart D
United States
-
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.arcped.2008.12.021" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.arcped.2008.12.021</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
Transition from pediatric to adult care: experience of a cystic fibrosis care center]
Publisher
An entity responsible for making the resource available
Archives De Pediatrie
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Female; Humans; Male; Young Adult; Continuity of Patient Care; Quality of Health Care; Adolescent Health Services; adolescent; Adolescent Transitions; Cystic Fibrosis/therapy; France
Creator
An entity primarily responsible for making the resource
Malbrunot-Wagner AC; Bonnemains C; Troussier F; Darviot E; Chiffoleau M; Person C; Urban T; Ginies JL
Description
An account of the resource
BACKGROUND AND OBJECTIVE: Even though patients with cystic fibrosis (CF) are continuously improving their life expectancy, guidelines for transition to adult services have not been clearly determined yet. The aim of this study was to analyze the management of this transition in the CF care center of Angers, France. PATIENTS AND METHOD: From their medical files, we analyzed the transfer of 22 patients with CF from pediatric to adult care. The perceptions of patients and caregivers regarding this transition were evaluated using anonymous questionnaires. RESULTS: The initial objective was to transfer patients around 18 years of age, offering them 3 or 4 joint consultations with a pediatrician and adult lung specialist. The median age of transfer was 22 years and the median duration of the transition period was 9 months. Half of the patients had only 1 joint transfer consultation during transition. The patient reaching the age of 18 and maturity were the most common criteria mentioned for transfer. All highlighted problems leaving the pediatric team they had grown attached to and its familiar environment. Caregivers described the transfer as a success, whereas half of the patients were dissatisfied with it, with both patients and caregivers indicating that the transition was too short without enough joint consultations. CONCLUSIONS: This study shows that this period is a major life event for the patient with CF. The transition process must be organized with the patient and independent behaviors should be encouraged. Adult and pediatric teams need to cooperate. Based on this experience and former medical data, we suggest a transition program for patients with CF.
2009
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.arcped.2008.12.021" target="_blank" rel="noreferrer">10.1016/j.arcped.2008.12.021</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
2009
Adolescent
Adolescent Health Services
Adolescent Transitions
Archives de Pediatrie
Backlog
Bonnemains C
Chiffoleau M
Continuity Of Patient Care
Cystic Fibrosis/therapy
Darviot E
Female
France
Ginies JL
Humans
Journal Article
Malbrunot-Wagner AC
Male
Person C
Quality Of Health Care
Troussier F
Urban T
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/10.1016/j.ctrv.2006.11.004" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.ctrv.2006.11.004</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 in adolescents
Publisher
An entity responsible for making the resource available
Cancer Treatment Reviews
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Adolescent Transitions
Creator
An entity primarily responsible for making the resource
Schrijvers D; Meijnders P
Description
An account of the resource
The cure rate of cancer in adolescents is high but between 10% and 40% of them will develop incurable disease depending on tumor type and prognostic factors. These patients will need palliative care defined as supportive care to optimize comfort, function and social support of the patient and the family. Palliative care should include attention to symptom control, psychosocial and spiritual issues and should be given by a multidisciplinary team. Palliative care in adolescents should also take care of the specific physical and psychosocial developmental changes in this age group. Furthermore, specific spiritual, ethical and legal issues have to be taken into account.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ctrv.2006.11.004" target="_blank" rel="noreferrer">10.1016/j.ctrv.2006.11.004</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 Transitions
Backlog
Cancer Treatment Reviews
Journal Article
Meijnders P
Schrijvers D
-
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.ejcnurse.2008.10.001" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.ejcnurse.2008.10.001</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
Implementation of transition programs can prevent another lost generation of patients with congenital heart disease
Publisher
An entity responsible for making the resource available
European Journal Of Cardiovascular Nursing
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; Humans; Adult; Health Services Needs and Demand; Treatment Outcome; Program Development; Longevity; Morbidity; adolescent; Adolescent Transitions; Heart Defects; Continuity of Patient Care/organization & administration; Aftercare/organization & administration; Congenital/complications/epidemiology/prevention & control; Patient Education as Topic/organization & administration
Creator
An entity primarily responsible for making the resource
Moons P; Hilderson D; Van Deyk K
Description
An account of the resource
Congenital heart disease is the most frequently occurring birth defect. To date, more than 90% of the children born with a heart defect reach adulthood. Since many patients are prone to residua and sequelae, lifelong specialized care is required. However, studies indicate that about one-half to three-quarters of the patients are lost to follow-up when they have grown up. This has resulted in a virtual lost generation. Lapse of care is associated with significant morbidity. Therefore, implementation of strategies to prevent patients from failing to continue regular follow-up is critical. It is argued that transition programs that inform patients about the rationale for ongoing follow-up and that teach them how to navigate the medical system can avoid another lost generation.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ejcnurse.2008.10.001" target="_blank" rel="noreferrer">10.1016/j.ejcnurse.2008.10.001</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
Adolescent
Adolescent Transitions
Adult
Aftercare/organization & administration
Backlog
Child
Congenital/complications/epidemiology/prevention & control
Continuity Of Patient Care/organization & Administration
European Journal Of Cardiovascular Nursing
Health Services Needs And Demand
Heart Defects
Hilderson D
Humans
Journal Article
Longevity
Moons P
Morbidity
Patient Education as Topic/organization & administration
Program Development
Treatment Outcome
Van Deyk K
-
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.jacc.2008.10.001" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jacc.2008.10.001</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
ACC/AHA 2008 guidelines for the management of adults with congenital heart disease: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Writing Committee to Develop Guidelines on the Management of Adults With Congenital Heart Disease). Developed in Collaboration With the American Society of Echocardiography, Heart Rhythm Society, International Society for Adult Congenital Heart Disease, Society for Cardiovascular Angiography and Interventions, and Society of Thoracic Surgeons
Publisher
An entity responsible for making the resource available
Journal Of The American College Of Cardiology
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; United States; Adult; Adolescent Transitions; Heart Defects; Congenital/therapy; Heart Diseases/congenital/therapy; American Heart Association; Cardiology/methods/standards
Creator
An entity primarily responsible for making the resource
Warnes CA; Williams RG; Bashore TM; Child JS; Connolly HM; Dearani JA; del Nido P; Fasules JW; Graham TP; Hijazi ZM; Hunt SA; King ME; Landzberg MJ; Miner PD; Radford MJ; Walsh EP; Webb GD; Smith SC; Jacobs AK; Adams CD; Anderson JL; Antman EM; Buller CE; Creager MA; Ettinger SM; Halperin JL; Hunt SA; Krumholz HM; Kushner FG; Lytle BW; Nishimura RA; Page RL; Riegel B; Tarkington LG; Yancy CW; American College of Cardiology; American Heart Association Task Force on Practice Guidelines (Writing Committee to Develop Guidelines on the Management of Adults With Congenital Heart Disease); American Society of Echocardiography; Heart Rhythm Society; International Society for Adult Congenital Heart Disease; Society for Cardiovascular Angiography; Interventions; Society of Thoracic Surgeons
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jacc.2008.10.001" target="_blank" rel="noreferrer">10.1016/j.jacc.2008.10.001</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
2008
2008
Adams CD
Adolescent Transitions
Adult
American College of Cardiology
American Heart Association
American Heart Association Task Force on Practice Guidelines (Writing Committee to Develop Guidelines on the Management of Adults With Congenital Heart Disease)
American Society of Echocardiography
Anderson JL
Antman EM
Backlog
Bashore TM
Buller CE
Cardiology/methods/standards
Child JS
Congenital/therapy
Connolly HM
Creager MA
Dearani JA
del Nido P
Ettinger SM
Fasules JW
Graham TP
Halperin JL
Heart Defects
Heart Diseases/congenital/therapy
Heart Rhythm Society
Hijazi ZM
Humans
Hunt SA
International Society for Adult Congenital Heart Disease
Interventions
Jacobs AK
Journal Article
Journal of the American College of Cardiology
King ME
Krumholz HM
Kushner FG
Landzberg MJ
Lytle BW
Miner PD
Nishimura RA
Page RL
Radford MJ
Riegel B
Smith SC
Society for Cardiovascular Angiography
Society of Thoracic Surgeons
Tarkington LG
United States
Walsh EP
Warnes CA
Webb GD
Williams RG
Yancy CW
-
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.jacc.2010.03.085" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jacc.2010.03.085</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
Changing mortality in congenital heart disease
Publisher
An entity responsible for making the resource available
Journal Of The American College Of Cardiology
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; Female; Humans; infant; Male; Young Adult; Cohort Studies; Prognosis; Aged; Middle Aged; Age Factors; Survival Analysis; Sex Factors; Quebec; adolescent; Preschool; infant; Adolescent Transitions; Newborn; retrospective studies; cause of death; Heart Defects; Congenital/diagnosis/mortality/surgery; Cardiac Surgical Procedures/methods/mortality
Creator
An entity primarily responsible for making the resource
Khairy P; Ionescu-Ittu R; Mackie AS; Abrahamowicz M; Pilote L; Marelli AJ
Description
An account of the resource
OBJECTIVES: This study sought to characterize temporal trends in all-cause mortality in patients with congenital heart disease (CHD). BACKGROUND: Historically, most deaths in patients with CHD occurred in early childhood. Notable advances have since been achieved that may impact on mortality trends. METHODS: We conducted a population-based cohort study of patients with CHD in Quebec, Canada, from July 1987 to June 2005. A total of 8,561 deaths occurred in 71,686 patients with CHD followed for 982,363 patient-years. RESULTS: The proportion of infant and childhood deaths markedly declined from 1987 to 2005, with a reduction in mortality that exceeded that of the general population. Distribution of age at death transitioned from a bimodal to unimodal, albeit skewed, pattern, more closely approximating the general population. Overall, mortality decreased by 31% (mortality rate ratio: 0.69, 95% confidence interval [CI]: 0.61 to 0.79) in the last (2002 to 2005) relative to the first (1987 to 1990) period of observation. Mortality rates decreased in all age groups below 65 years, with the largest reduction in infants (mortality rate ratio: 0.23, 95% CI: 0.12 to 0.47). In adults 18 to 64 years, the mortality reduction (mortality rate ratio: 0.84, 95% CI: 0.73 to 0.97) paralleled the general population. Gains in survival were mostly driven by reduced mortality in severe forms of CHD, particularly in children (mortality rate ratio: 0.33, 95% CI: 0.19 to 0.60), and were consistent across most subtypes. CONCLUSIONS: Deaths in CHD have shifted away from infants and towards adults, with a steady increase in age at death and decreasing mortality.
2010
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jacc.2010.03.085" target="_blank" rel="noreferrer">10.1016/j.jacc.2010.03.085</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
2010
Abrahamowicz M
Adolescent
Adolescent Transitions
Age Factors
Aged
Backlog
Cardiac Surgical Procedures/methods/mortality
Cause Of Death
Child
Cohort Studies
Congenital/diagnosis/mortality/surgery
Female
Heart Defects
Humans
Infant
Ionescu-Ittu R
Journal Article
Journal of the American College of Cardiology
Khairy P
Mackie AS
Male
Marelli AJ
Middle Aged
Newborn
Pilote L
Preschool
Prognosis
Quebec
Retrospective Studies
Sex Factors
Survival Analysis
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/10.1016/j.jadohealth.2009.05.011" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jadohealth.2009.05.011</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
How adult specialists deal with the principles of a successful transition
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
2009
Subject
The topic of the resource
Female; Humans; Male; Physician-Patient Relations; Pediatrics; Logistic Models; Questionnaires; Middle Aged; Continuity of Patient Care; adolescent; Adolescent Transitions; Chronic Disease/therapy; Physicians/psychology; Switzerland
Creator
An entity primarily responsible for making the resource
Suris JC; Akre C; Rutishauser C
Description
An account of the resource
OBJECTIVES: To evaluate whether adult specialists comply with the basic principles for a successful transition of adolescents with chronic disorders, and to determine whether the characteristics of the adult specialists have an influence on applying these principles. METHODS: Out of 299 adult specialists in four French-speaking Swiss cantons, 209 (70%) answered a paper-and-pencil mailed questionnaire between May and July 2007. Only those having received the transfer of at least one adolescent in the previous 2 years (N=102) were included in the analysis. We analyzed four dependent variables: discussing common concerns of adolescent patients, seeing the patient alone, having a transition protocol, and having a previous contact with the pediatric specialist. A logistic regression was performed for each dependent variable controlling for the physicians' characteristics (number of transfers, age, gender, workplace, and perceived experience). RESULTS: Fifty-four percent of the physicians did not spend time alone with their patients, and sensitive issues such as sexuality or substance use were not widely discussed with their young patients. Most respondents (59%) did not have an established protocol, and 54% did not have any contact with the pediatric specialist. In the multivariate analyses, the adult specialists' characteristics had little impact. CONCLUSIONS: For many adolescents with chronic disorders the transition from pediatric to adult healthcare seems to be limited to a simple transfer, often lacking adequate communication between physicians. Applying simple but basic principles such as a good coordination between providers would probably improve the quality of healthcare of adolescents with chronic illness.
2009
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jadohealth.2009.05.011" target="_blank" rel="noreferrer">10.1016/j.jadohealth.2009.05.011</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
2009
Adolescent
Adolescent Transitions
Akre C
Backlog
Chronic Disease/therapy
Continuity Of Patient Care
Female
Humans
Journal Article
Logistic Models
Male
Middle Aged
Pediatrics
Physician-patient Relations
Physicians/psychology
Questionnaires
Rutishauser C
Suris JC
Switzerland
The Journal Of Adolescent Health : Official Publication Of The Society For Adolescent Medicine
-
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.jcf.2008.06.003" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jcf.2008.06.003</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
An international/multicentre report on patients with cystic fibrosis (CF) over the age of 40 years
Publisher
An entity responsible for making the resource available
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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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
-
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.jcf.2009.05.004" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jcf.2009.05.004</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
Implementation of European standards of care for cystic fibrosis - provision of care
Publisher
An entity responsible for making the resource available
Journal Of Cystic Fibrosis
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Humans; Practice Guidelines as Topic; Health Care Surveys; Questionnaires; Guideline Adherence; Europe; Adolescent Transitions; caregivers; Cystic Fibrosis/therapy; Patient Care/standards
Creator
An entity primarily responsible for making the resource
Elborn JS; Hodson M; Bertram C
Description
An account of the resource
BACKGROUND: Several guidelines for cystic fibrosis (CF) caregivers exist, but information about their implementation is lacking. METHODS: Adherence to European Consensus Guidelines for CF was studied by sending surveys to named healthcare professionals in 487 CF centres/units. Data were analysed qualitatively. RESULTS: Data were obtained from 177 CF clinics, providing care for 21,177 patients (33% response rate). Access to specialist healthcare professionals was good according to 80% of respondents, although only 59% reported access to specialist pharmacists. Of the respondents, 16% reported unlimited access to inpatient CF beds, however 22% reported a lack of availability of immediate care. Most respondents (84%) reviewed their patients quarterly as outpatients. Shared-care models were used by 84% of respondents. Availability and adequacy of funding presented an issue for many, although 8% of respondents indicated that key funding was derived from CF charities. CONCLUSIONS: The respondents demonstrated a high degree of implementation of European Consensus Guidelines. However, areas for improvement include shared care, access to care and funding inequalities.
2009
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jcf.2009.05.004" target="_blank" rel="noreferrer">10.1016/j.jcf.2009.05.004</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
Adolescent Transitions
Backlog
Bertram C
Caregivers
Cystic Fibrosis/therapy
Elborn JS
Europe
Guideline Adherence
Health Care Surveys
Hodson M
Humans
Journal Article
Journal of Cystic Fibrosis
Patient Care/standards
Practice Guidelines As Topic
Questionnaires
-
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/10.1080/08039480801979586" target="_blank" rel="noreferrer">http://doi.org/10.1080/08039480801979586</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
The Adolescent Adjustment Profile (AAP) in comparisons of patients with obesity, phenylketonuria or neurobehavioural disorders
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Adolescent Transitions; Adjustment; Neurobehavioural syndromes; Obesity; Phenylketonuria; Questionnaires
Creator
An entity primarily responsible for making the resource
Olsson G; Marild S; Alm J; Brodin U; Rydelius PA; Marcus C
Description
An account of the resource
Psychosocial development in children with chronic disease is a key issue in paediatrics. This study investigated whether psychosocial adjustment could be reliably assessed with the 42-item Adolescent Adjustment Profile (AAP) instrument. The study mainly focused on adjustment-to-obesity measurement, although it compared three patient groups with chronic conditions. All phenylketonuria (PKU) patients in Sweden between ages 9 and 18 and their parents and teachers were invited to participate. Patients with neurobehavioural syndromes and obesity were age- and gender-matched with PKU patients. Healthy children constituted a reference group. Psychosocial adjustment was measured using the AAP, which is a multi-informant questionnaire that contains four domains. Information concerning parents' socio-economic and civil status was requested separately. Respondents to the three questionnaires judged the PKU patients to be normal in all four domains. Patients with neurobehavioural syndromes demonstrated less competence and the most problems compared with the other three groups. According to the self-rating, the parent rating and the teacher rating questionnaires, obese patients had internalizing problems. The parent rating and the teacher rating questionnaire scored obese patients as having a lower work capacity than the reference group. Compared with the reference group, not only families with obese children but also families with children with neurobehavioural syndromes had significantly higher divorce rates. Obese patients were also investigated with the Strength and Difficulties Questionnaire (SDQ), another instrument that enables comparison between two measures of adjustment. The AAP had good psychometric properties; it was judged a useful instrument in research on adolescents with chronic diseases.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/08039480801979586" target="_blank" rel="noreferrer">10.1080/08039480801979586</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
Adjustment
Adolescent Transitions
Alm J
Backlog
Brodin U
Journal Article
Marcus C
Marild S
Neurobehavioural syndromes
Obesity
Olsson G
Phenylketonuria
Questionnaires
Rydelius PA
-
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/10.1093/jpepsy/jsn017" target="_blank" rel="noreferrer">http://doi.org/10.1093/jpepsy/jsn017</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
Psychosocial functioning in youth with glycogen storage disease type I
Publisher
An entity responsible for making the resource available
Journal of Pediatric Psychology
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; Florida; Family Health; Case-Control Studies; quality of life; adolescent; Preschool; Adaptation; Psychological; Adolescent Transitions; Parents/psychology; Diabetes Mellitus/psychology; Glycogen Storage Disease Type I/psychology; Loneliness
Creator
An entity primarily responsible for making the resource
Storch E; Keeley M; Merlo L; Jacob M; Correia C; Weinstein D
Description
An account of the resource
OBJECTIVE: To assess the quality of life and psychosocial functioning among pediatric patients with Glycogen Storage Disease (GSD) types Ia and Ib. METHODS: Thirty-one youth with GSD types Ia and Ib and 42 healthy controls participated. Quality of life ratings from the GSD types Ia and Ib sample were compared with a previously reported clinical comparison sample. Children completed measures of quality of life, loneliness, family functioning, and sibling relationship quality (e.g., warmth, conflict). Parents completed measures of parental distress, parenting stress, child adaptive behavior, and child emotional and behavioral functioning. RESULTS: Quality of life was generally lower in youth with GSD relative to healthy controls but similar to those with a chronic illness. Children with GSD were rated as having more internalizing symptoms, social problems, and lower independent functioning relative to healthy controls. Parents reported greater distress and parenting stress relative to healthy controls. CONCLUSIONS: The presence of GSD types Ia and Ib are associated with reduced quality of life and independent functioning, and elevated levels of internalizing distress and parental stress relative to healthy peers. Relative to their children, parents generally reported that their child was more impaired, which suggests the need for multiple informants during assessment and active parental involvement during psychological treatment. These points should be kept in mind when assessing and treating youth with this disease and their families as psychological interventions that target areas of concern (e.g., adherence, coping with having a chronic disease) may be helpful for improving child and family outcomes.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/jpepsy/jsn017" target="_blank" rel="noreferrer">10.1093/jpepsy/jsn017</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
Adaptation
Adolescent
Adolescent Transitions
Adult
Backlog
Case-Control Studies
Child
Correia C
Diabetes Mellitus/psychology
Family Health
Female
Florida
Glycogen Storage Disease Type I/psychology
Humans
Jacob M
Journal Article
Journal of Pediatric Psychology
Keeley M
Loneliness
Male
Merlo L
Parents/psychology
Preschool
Psychological
Quality Of Life
Storch E
Weinstein D
-
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/10.1093/ndt/gfl770" target="_blank" rel="noreferrer">http://doi.org/10.1093/ndt/gfl770</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
Adolescents with renal disease in an adult world: meeting the challenge of transition of care
Publisher
An entity responsible for making the resource available
Nephrology, Dialysis, Transplantation
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Delivery of Health Care; Humans; Pediatrics; Parent-Child Relations; Age Factors; Continuity of Patient Care; Adolescent Health Services; Patient Compliance; adolescent; Adolescent Transitions; Kidney Diseases/psychology/therapy; Adolescent Medicine; Nephrology
Creator
An entity primarily responsible for making the resource
Bell L
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/ndt/gfl770" target="_blank" rel="noreferrer">10.1093/ndt/gfl770</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
2007
2007
Adolescent
Adolescent Health Services
Adolescent Medicine
Adolescent Transitions
Age Factors
Backlog
Bell L
Continuity Of Patient Care
Delivery of Health Care
Humans
Journal Article
Kidney Diseases/psychology/therapy
Nephrology
Nephrology, Dialysis, Transplantation
Parent-child Relations
Patient Compliance
Pediatrics
-
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/10.1097/01.pec.0000248701.87916.05" target="_blank" rel="noreferrer">http://doi.org/10.1097/01.pec.0000248701.87916.05</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
Age limits and transition of health care in pediatric emergency medicine
Publisher
An entity responsible for making the resource available
Pediatric Emergency Care
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; United States; Pregnancy; Pediatrics; Adult; Data Collection; Age Factors; Cystic Fibrosis; Hospitals; Emergency Medicine; Organizational Policy; Emergency Service; adolescent; Adolescent Transitions; Pregnancy in Adolescence; Pediatric/statistics & numerical data; Hospital/statistics & numerical data; General/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Dobson JV; Bryce L; Glaeser PW; Losek JD
Description
An account of the resource
OBJECTIVE: To describe the practice reported by pediatric emergency department (PED) medical directors regarding age limits and transition of health care in their emergency departments and institutions. METHODS: A 28-question survey was sent by e-mail to 116 PED medical directors. Descriptive statistics were used to report results; chi tests were used for comparing categorical data. RESULTS: The survey was completed by 73 PED medical directors (63%). Age-limit policies were present in 58 (79%) of the PEDs, and 56 reported a specific age. The 18th and 21st birthdays were the most common specific ages cited. Thirty-six PEDs (64%) had an age limit of younger than 21 years. Pediatric emergency departments with age limits of 21 years or older versus younger than 21 years had a significantly higher rate of being associated with freestanding children's hospitals (P = 0.037). Appropriate exceptions to the age-limit policy included patients both over and under the age limit. The most common overage limit exception was cystic fibrosis, and the most common underage limit exception was teenage pregnancy. Thirteen PED medical directors (18%) were aware of a transition-of-care (pediatric to adult care provider) policy or work group at their institution, and 47 (64%) thought that such a work group would be valuable to addressing transition-of-care issues. CONCLUSION: In pediatric emergency medicine, the age of transition from pediatric to adult emergency care providers is variable both between and within institutions. Most PEDs have age limits of younger than 21 years. Most PED medical directors support a multidisciplinary work group or committee as a method of addressing transition of care. Known barriers to transition of care previously reported in the literature are reviewed.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.pec.0000248701.87916.05" target="_blank" rel="noreferrer">10.1097/01.pec.0000248701.87916.05</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
Adolescent Transitions
Adult
Age Factors
Backlog
Bryce L
Child
Cystic Fibrosis
Data Collection
Dobson JV
Emergency Medicine
Emergency Service
Female
General/statistics & numerical data
Glaeser PW
Hospital/statistics & numerical data
Hospitals
Humans
Journal Article
Losek JD
Male
Organizational Policy
Pediatric Emergency Care
Pediatric/statistics & Numerical Data
Pediatrics
Pregnancy
Pregnancy in Adolescence
United States
-
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/MOP.0b013e328305e128" target="_blank" rel="noreferrer">http://doi.org/10.1097/MOP.0b013e328305e128</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
Transition from pediatric to adult services: are we getting it right?
Publisher
An entity responsible for making the resource available
Current Opinion In Pediatrics
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; Pediatrics; Age Factors; Australia; adolescent; Models; Adolescent Transitions; Chronic disease; Continuity of Patient Care/organization & administration; Delivery of Health Care/organization & administration; Organizational; Patient Care Planning/organization & administration; Adolescent Medicine/organization & administration
Creator
An entity primarily responsible for making the resource
Kennedy A; Sawyer S
Description
An account of the resource
PURPOSE OF REVIEW: The transition of healthcare from pediatric to adult settings has become more significant over the past 20 years as the survival of young people with chronic illness and disability has increased and healthcare delivery has become more complex. This review examines the evidence from recent studies and position statements to determine the current issues relating to transition. RECENT FINDINGS: Although there are many examples of excellent transition processes, these are mostly confined to individual clinics (often subspecialist), with little evidence of hospital-wide or regional planning. The notion of transition to adult healthcare has now spread from its roots in adolescent medicine to influence many subspecialty areas of practice. However, it remains largely confined to a pediatric paradigm and risks becoming disconnected from the principles and practice of adolescent medicine from which it emerged. SUMMARY: More systematic investment in regional clinical service planning is indicated, as is investment in more systematic approaches to training both pediatric and adult healthcare providers around the importance of transition to adult healthcare. Collaboration is urged in relationship to clinical service developments, training and research initiatives.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/MOP.0b013e328305e128" target="_blank" rel="noreferrer">10.1097/MOP.0b013e328305e128</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
Adolescent
Adolescent Medicine/organization & administration
Adolescent Transitions
Age Factors
Australia
Backlog
Chronic Disease
Continuity Of Patient Care/organization & Administration
Current Opinion In Pediatrics
Delivery of Health Care/organization & administration
Humans
Journal Article
Kennedy A
Models
Organizational
Patient Care Planning/organization & administration
Pediatrics
Sawyer S
-
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/MOT.0b013e32833984a5" target="_blank" rel="noreferrer">http://doi.org/10.1097/MOT.0b013e32833984a5</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
Adherence to medical recommendations and transition to adult services in pediatric transplant recipients
Publisher
An entity responsible for making the resource available
Current Opinion In Organ Transplantation
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Humans; Young Adult; Adult; Practice Guidelines as Topic; Drug Monitoring; Treatment Outcome; Risk Assessment; Risk Factors; Continuity of Patient Care; Health Behavior; Patient Education as Topic; Practice; adolescent; Attitudes; Adolescent Transitions; Health Knowledge; Graft Survival; Immunosuppressive Agents/therapeutic use; Graft Rejection/etiology/prevention & control; Medication Adherence; Organ Transplantation/adverse effects
Creator
An entity primarily responsible for making the resource
Shemesh E; Annunziato RA; Arnon R; Miloh T; Kerkar N
Description
An account of the resource
PURPOSE OF REVIEW: Nonadherence to treatment recommendations, especially when associated with transition to adult care providers, account, by some estimates, for most organ rejections and death in long-term pediatric survivors of solid organ transplantations. It is therefore imperative that providers become familiar with the issues related to those major risks and ways to address them. RECENT FINDINGS: It is possible, and important, to routinely measure adherence to medications by using one of several available and proven methods of surveillance. There are numerous ways to improve adherence, and it is in fact possible to improve adherence and therefore outcomes in the transplant setting. The transition to adult services is a vulnerable period. The authors believe that it is possible to improve the transition process, and suggestions are presented in this review. However, solid research into interventions to improve transition is lacking. SUMMARY: Nonadherence to medical recommendations is prevalent and leads to poor outcomes following otherwise successful pediatric transplantation. An especially vulnerable period is the time when a recipient transitions to adult care. Routine monitoring of adherence, evaluating and addressing barriers to adherence, and collaborative, multidisciplinary care are all expected to substantially improve adherence and reduce the risks associated with transition.
2010
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/MOT.0b013e32833984a5" target="_blank" rel="noreferrer">10.1097/MOT.0b013e32833984a5</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
2010
Adolescent
Adolescent Transitions
Adult
Annunziato RA
Arnon R
Attitudes
Backlog
Continuity Of Patient Care
Current Opinion In Organ Transplantation
Drug Monitoring
Graft Rejection/etiology/prevention & control
Graft Survival
Health Behavior
Health Knowledge
Humans
Immunosuppressive Agents/therapeutic use
Journal Article
Kerkar N
Medication Adherence
Miloh T
Organ Transplantation/adverse effects
Patient Education as Topic
Practice
Practice Guidelines As Topic
Risk Assessment
Risk Factors
Shemesh E
Treatment Outcome
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/YCO.0b013e32832c9221" target="_blank" rel="noreferrer">http://doi.org/10.1097/YCO.0b013e32832c9221</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
Transition of care from child to adult mental health services: the great divide
Publisher
An entity responsible for making the resource available
Current Opinion In 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
Child; Humans; Young Adult; Great Britain; Adult; Health Policy; Health Services Needs and Demand; Health Services Research; Outcome and Process Assessment (Health Care); adolescent; Adolescent Transitions; Continuity of Patient Care/organization & administration; Adolescent Health Services/organization & administration; Child Health Services/organization & administration; Community Mental Health Services/organization & administration; Mental Disorders/diagnosis/psychology/therapy
Creator
An entity primarily responsible for making the resource
Singh SP
Description
An account of the resource
PURPOSE OF REVIEW: Adolescents with mental health problems often require transition of care from child and adolescent to adult mental health services. This review is a synthesis of current research and policy literature on transition to describe the barriers at the interface between child and adolescent mental health services and adult mental health services and outcomes of poor transition. RECENT FINDINGS: Adolescence is a risk period for emergence of serious mental disorders. Child and adolescent mental health services and adult mental health services use rigid age cut-offs to delineate service boundaries, creating discontinuities in provision of care. Adolescent mental health services are patchy across the world. Several recent studies have confirmed that problems occur during transition in diverse settings across several countries. In physical health, there are emerging models of practice to improve the process and outcomes of transition, but there is very little comparable literature in mental healthcare. SUMMARY: Poor transition leads to disruption in continuity of care, disengagement from services and is likely to lead to poorer clinical outcomes. Some young people, such as those with neurodevelopmental disorders and complex needs, are at a greater risk of falling through the care gap during transition. Services need robust and high-quality evidence on the process and outcomes of transition so that effective intervention strategies can be developed.
2009
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/YCO.0b013e32832c9221" target="_blank" rel="noreferrer">10.1097/YCO.0b013e32832c9221</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
2009
Adolescent
Adolescent Health Services/organization & administration
Adolescent Transitions
Adult
Backlog
Child
Child Health Services/organization & administration
Community Mental Health Services/organization & administration
Continuity Of Patient Care/organization & Administration
Current Opinion In Psychiatry
Great Britain
Health Policy
Health Services Needs And Demand
Health Services Research
Humans
Journal Article
Mental Disorders/diagnosis/psychology/therapy
Outcome And Process Assessment (health Care)
Singh SP
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.1365-2214.2006.00698.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1365-2214.2006.00698.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
Young people's satisfaction of transitional care in adolescent rheumatology in the UK
Publisher
An entity responsible for making the resource available
Child: Care, Health And Development
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; Cohort Studies; Great Britain; Adult; Parents; Questionnaires; Program Development; Patient Satisfaction; Sickness Impact Profile; quality of life; adolescent; Arthritis; Adolescent Transitions; Chronic disease; Continuity of Patient Care/organization & administration; Adolescent Health Services/organization & administration; Juvenile Rheumatoid/psychology/rehabilitation; Self Care/methods
Creator
An entity primarily responsible for making the resource
Shaw KL; Southwood TR; McDonagh JE; British Society of Paediatric; Adolescent Rheumatology
Description
An account of the resource
BACKGROUND: To examine the quality of transitional health care from the perspectives of young people with juvenile idiopathic arthritis (JIA) and their parents. METHODS: Adolescents with JIA and their parents were recruited from 10 major UK rheumatology centres. Satisfaction with health-care delivery was measured prior to, and 12 months after, the implementation of a structured and co-ordinated programme of transitional care using self-completed questionnaires designed for this study. RESULTS: Of 359 families invited to participate, 308 (86%) adolescents with JIA and 303 (84%) parents/guardians accepted. A fifth of adolescents had persistent oligoarthritis. Median age was 14.2 (11-18) years with median disease duration of 5.7 (0-16) years. Young people and their parents rated provider characteristics more important than aspects of the physical environment or process issues. Staff honesty and knowledge were rated as the most essential aspects of best practice. Prior to implementing the programme of transitional care, parents rated service delivery for all items significantly worse than best practice. Overall satisfaction improved 12 months after entering the programme. However, while parent satisfaction improved for 70.4% of items, significant improvements were only observed for three (13.6%) items rated by adolescents. CONCLUSION: The perceived quality of health care for young people with JIA and their parents was significantly lower than what they would like. Satisfaction with many aspects of care during transition from paediatric to adult services can be improved through the implementation of a structured, co-ordinated programme of transitional care.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1365-2214.2006.00698.x" target="_blank" rel="noreferrer">10.1111/j.1365-2214.2006.00698.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
2007
Adolescent
Adolescent Health Services/organization & administration
Adolescent Rheumatology
Adolescent Transitions
Adult
Arthritis
Backlog
British Society of Paediatric
Child
Child: Care, Health and Development
Chronic Disease
Cohort Studies
Continuity Of Patient Care/organization & Administration
Female
Great Britain
Humans
Journal Article
Juvenile Rheumatoid/psychology/rehabilitation
Male
McDonagh JE
Parents
Patient Satisfaction
Program Development
Quality Of Life
Questionnaires
Self Care/methods
Shaw KL
Sickness Impact Profile
Southwood TR
-
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.1365-2214.2006.00699.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1365-2214.2006.00699.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
Development and preliminary validation of the 'Mind the Gap' scale to assess satisfaction with transitional health care among adolescents with juvenile idiopathic arthritis
Publisher
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Child: Care, Health And Development
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; Humans; Cohort Studies; Great Britain; Adult; Parents; Questionnaires; Aged; Middle Aged; Patient Satisfaction; Sickness Impact Profile; quality of life; adolescent; Arthritis; Adolescent Transitions; Continuity of Patient Care/organization & administration; Adolescent Health Services/organization & administration; Chronic Disease/psychology; Juvenile Rheumatoid/psychology/rehabilitation; Self Care/methods
Creator
An entity primarily responsible for making the resource
Shaw KL; Southwood TR; McDonagh JE; British Society of Paediatric; Adolescent Rheumatology
Description
An account of the resource
BACKGROUND: To develop a scale to assess satisfaction with transitional health care among adolescents with a chronic illness and their parents. METHODS: The 'Mind the Gap' scale was developed using evidence from a previous needs assessment, in three stages: (1) definition of the construct; (2) design of the scale items, response options and instructions; (3) full administration of the scale, item analysis and dimensionality analysis. The scale was administered to 308 adolescents with juvenile idiopathic arthritis (JIA) and 303 parents/guardians, prior to and 12 months after the implementation of an evaluation of a structured and co-ordinated programme of transitional care. The patient population involved adolescents with JIA and their parents recruited from 10 major UK rheumatology centres. RESULTS: A total of 301 (97.7%) adolescents and 286 (95.0%) parents chose to complete the questionnaire, with median item completion rates of 100.0% (0-100%) for both adolescents and parents thus confirming feasibility. Face and content validity were confirmed. Factor analyses revealed a three-factor structure which explained 49.5% and 56.1% of the variation in adolescent and parent scores respectively. The internal consistency of each subscale ('management of environment', 'provider characteristics' and 'process issues') was indicated by Cronbach's alphas of 0.71, 0.89 and 0.89 for adolescents, respectively, and 0.83, 0.91 and 0.92 for parents respectively. Cronbach's alphas for the entire scales were 0.91 and 0.94 for the adolescent and parent forms respectively. CONCLUSION: These preliminary results report the potential of the 'Mind the Gap' scale in evaluating transitional care for adolescents with JIA. In view of the generic nature of transitional care reflected in the scale, this scale has wider potential for use with adolescents with other chronic illness in view of the generic nature of transition. This development is particularly timely in the context of transitional care developments in the UK and further validation of the scale is in progress.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1365-2214.2006.00699.x" target="_blank" rel="noreferrer">10.1111/j.1365-2214.2006.00699.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
2007
Adolescent
Adolescent Health Services/organization & administration
Adolescent Rheumatology
Adolescent Transitions
Adult
Aged
Arthritis
Backlog
British Society of Paediatric
Child
Child: Care, Health and Development
Chronic Disease/psychology
Cohort Studies
Continuity Of Patient Care/organization & Administration
Great Britain
Humans
Journal Article
Juvenile Rheumatoid/psychology/rehabilitation
McDonagh JE
Middle Aged
Parents
Patient Satisfaction
Quality Of Life
Questionnaires
Self Care/methods
Shaw KL
Sickness Impact Profile
Southwood TR
-
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.1365-2265.2008.03467.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1365-2265.2008.03467.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
Transition process of patients with type 1 diabetes (T1DM) from paediatric to the adult health care service: a hospital-based approach
Publisher
An entity responsible for making the resource available
Clinical Endocrinology
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Female; Humans; Young Adult; Pediatrics; Questionnaires; Patient Satisfaction; adolescent; Adolescent Transitions; retrospective studies; Diabetes Mellitus; Glycosylated/metabolism; Hemoglobin A; Patient Transfer/methods; Type 1/metabolism/therapy
Creator
An entity primarily responsible for making the resource
Cadario F; Prodam F; Bellone S; Trada M; Binotti M; Trada M; Allochis G; Baldelli R; Esposito S; Bona G; Aimaretti G
Description
An account of the resource
INTRODUCTION: The outcomes of different types of transitions of young people with chronic diseases have been poorly investigated. OBJECTIVE: To evaluate and compare a structured transition from the paediatric diabetes services (PDS) into the adult diabetic services (ADS) with an unstructured one. DESIGN: We retrospectively investigated 62 adolescents and young adults with type 1 diabetes discharged from the PDS from 1 January 1994 to 31 December 2004. Thirty-two patients (group A) were transferred to the ADS of the same hospital with an unstructured method (letter) and 30 patients after a structured transfer planned with adult physicians (group B). We analysed the date of the first admission in ADS, the glycated haemoglobin (HbA1c), the clinic attendance rate in PDS and in the first year in ADS, and a phone questionnaire on the transition experience. RESULTS: The duration of the transfer was longer in A than in B with a lack of medical assistance during the unstructured transition (P < 0.001). At the first visit in ADS, before any medical intervention, HbA1c was improved in B compared to the last in PDS (P < 0.01), and had a trend in worsening in A. After 1 year in the ADS there was a better clinical attendance, and a lower HbA1c in B than in A (P < 0.05). All the subjects of group B reported a favourable opinion for the structured transition (P < 0.0001). CONCLUSION: The transition process plays an important role in diabetic care and a structured plan is mandatory to avoid to lose the patients and to get worse their health.
2009
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1365-2265.2008.03467.x" target="_blank" rel="noreferrer">10.1111/j.1365-2265.2008.03467.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
2009
Adolescent
Adolescent Transitions
Aimaretti G
Allochis G
Backlog
Baldelli R
Bellone S
Binotti M
Bona G
Cadario F
Clinical Endocrinology
Diabetes Mellitus
Esposito S
Female
Glycosylated/metabolism
Hemoglobin A
Humans
Journal Article
Patient Satisfaction
Patient Transfer/methods
Pediatrics
Prodam F
Questionnaires
Retrospective Studies
Trada M
Type 1/metabolism/therapy
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.1399-3046.2007.00765.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1399-3046.2007.00765.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
Identification of medication non-adherence factors in adolescent transplant patients: the patient's viewpoint
Publisher
An entity responsible for making the resource available
Pediatric Transplantation
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Adolescent Transitions
Creator
An entity primarily responsible for making the resource
Bullington P; Pawola L; Walker R; Valenta A; Briars L; John E
Description
An account of the resource
Studies report a clear association between medication non-adherence and an unfavorable transplant outcome. The adolescent population, in particular, has difficulty adhering to post-transplant medication regimens. The purpose of this study is to identify, categorize and understand the opinions of adolescent transplant patients regarding why they may not take their medications as prescribed. From January to August 2005, nine adolescent kidney transplant patients at an urban medical center were surveyed and asked to rank-order 33 statements regarding their opinions on why adolescents may not take their medications as prescribed. Q-methodology, a powerful tool in subjective study, was used to identify and categorize the viewpoints of adolescents on this subject. Three factors emerged and were labeled to reflect their distinct viewpoints: (1) Medication Issues (e.g. taste, size, frequency, schedule), (2) Troubled Adolescent (e.g. poor home life, depression, overwhelming situation), and (3) Deliberate Non-Adherer (e.g. attention-seeker, infallible attitude). By understanding these different viewpoints and the factors that contribute to them, it may be easier to identify which management approach to non-adherence works best in specific subgroups of patients.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1399-3046.2007.00765.x" target="_blank" rel="noreferrer">10.1111/j.1399-3046.2007.00765.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
2007
Adolescent Transitions
Backlog
Briars L
Bullington P
John E
Journal Article
Pawola L
Pediatric Transplantation
Valenta A
Walker R
-
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.1399-3046.2007.00886.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1399-3046.2007.00886.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
Perceived barriers to adherence among adolescent renal transplant candidates
Publisher
An entity responsible for making the resource available
Pediatric Transplantation
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Adolescent Transitions
Creator
An entity primarily responsible for making the resource
Zelikovsky N; Schast AP; Palmer J; Meyers KE
Description
An account of the resource
Non-adherence to medical regimens is a ubiquitous hindrance to quality health care among adolescent transplant recipients. Identification of potentially modifiable barriers to adherence when patients are listed for organ transplant would help with early intervention efforts to prepare adolescents for the stringent medication regimen post-transplant. Fifty-six adolescents listed for a kidney transplant, mean age 14.27 (s.d. = 2.2; range 11-18 yr), 73.2% male, 62.5% Caucasian participated in a semi-structured interview, the Medical Adherence Measure, to assesses the patient's knowledge of the prescribed regimen, reported adherence (missed and late doses), the system used to organized medications, and who holds the primary responsibility over medication management. Better knowledge of the medication regimen was associated with fewer missed doses (r = -0.48, p < 0.001). Patients who perceived more barriers had more missed (r = 0.38, p = 0.004) and late (r = 0.47, p < 0.001) doses. Patients who endorsed "just forget," the most common barrier (56.4%), reported significantly more missed (z = -4.25, p < 0.001) and late (z = -2.2, p = 0.02) doses. Only one-third of the transplant candidates used a pillbox to organize medications but these patients had significantly better adherence, z = -2.2, p = 0.03. With regard to responsibility over managing the regimens, adolescents missed fewer doses when their parents were in charge than when they were solely responsible, z = -2.1, p = 0.04. Interventions developed to prepare transplant candidates for a stringent post-transplant regimen need to focus on ensuring accurate knowledge of as simple a regimen as possible. Use of an organized system such as a pillbox to establish a routine and facilitate tracking of medications is recommended with integration of reminders that may be appealing for this age group. Although individuation is developmentally normative at this age, parent involvement seems critical until the adolescent is able to manage the responsibility more independently.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1399-3046.2007.00886.x" target="_blank" rel="noreferrer">10.1111/j.1399-3046.2007.00886.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
2008
Adolescent Transitions
Backlog
Journal Article
Meyers KE
Palmer J
Pediatric Transplantation
Schast AP
Zelikovsky N
-
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.1440-1754.2008.01321.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1440-1754.2008.01321.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
Transition in chronic illness: Who is going where?
Publisher
An entity responsible for making the resource available
Journal Of Paediatrics And Child Health
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; Humans; Interviews as Topic; Hospitals; Pediatric; adolescent; Adolescent Transitions; Continuity of Patient Care/organization & administration; Adolescent Medicine; Delivery of Health Care/organization & administration; Chronic Disease/epidemiology/therapy; New South Wales/epidemiology
Creator
An entity primarily responsible for making the resource
Steinbeck KS; Brodie L; Towns SJ
Description
An account of the resource
AIM: With increasing survival rates for chronic childhood illness, there has been an increasing focus on the transition of clinical care from paediatric to adult services. Data regarding patient numbers are essential for strategic planning and for optimal management. We report on a data collection exercise from the New South Wales Greater Metropolitan Clinical Taskforce Transition Program. METHODS: Data were collected between August 2004 and October 2005 through face-to-face interviews with over 200 clinicians in 68 clinical services in tertiary paediatric hospitals in New South Wales, providing information on approximately 4200 patients. RESULTS: Sixty-eight services kept a database on patients with chronic illness but less than half were electronic. Eight services (12%) could specifically identify patients in the active phase of transition on their databases. The five most prevalent clinical groups requiring transition to adult specialist health care (excluding cerebral palsy and developmental disability) were diabetes, other endocrinology, neurology, spina bifida and gastroenterology. CONCLUSIONS: There are large numbers of young people with chronic illness and disability who need effective transition to long-term adult care. This study has enabled the identification of paediatric aspects of the transition process that require attention.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1440-1754.2008.01321.x" target="_blank" rel="noreferrer">10.1111/j.1440-1754.2008.01321.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
2008
Adolescent
Adolescent Medicine
Adolescent Transitions
Backlog
Brodie L
Child
Chronic Disease/epidemiology/therapy
Continuity Of Patient Care/organization & Administration
Delivery of Health Care/organization & administration
Hospitals
Humans
Interviews As Topic
Journal Article
Journal of Paediatrics and Child Health
New South Wales/epidemiology
Pediatric
Steinbeck KS
Towns SJ
-
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.1445-5994.2007.01440.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1445-5994.2007.01440.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
Young people with chronic illness: the approach to transition
Publisher
An entity responsible for making the resource available
Internal Medicine Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Humans; Pediatrics; Adult; Age Factors; Australia; Self Care; adolescent; Adolescent Transitions; Chronic disease; Continuity of Patient Care/organization & administration; Delivery of Health Care/organization & administration
Creator
An entity primarily responsible for making the resource
Kennedy A; Sloman F; Douglass JA; Sawyer SM
Description
An account of the resource
As increasing numbers of young people with chronic illness reach adulthood, their ongoing medical care must evolve to be delivered in an adult rather than paediatric setting, a process known as transition. Towards this goal, increasing numbers of paediatric and adult hospitals are engaging in processes to promote the continuity of care for young people with chronic illness. Increasing evidence shows that adverse health consequences occur when inadequate transition arrangements are in place. This article draws from the experience of a transition programme emanating from the Royal Children's Hospital, Melbourne and describes the preparation that can ensure effective transition of young people with chronic illness to adult institutions. In paediatric settings, this includes opportunities for young people to be seen medically on their own to encourage independence with health-care goals and ensuring that adequate health information is transferred to the adult service. In adult institutions, understanding the concept of adolescent development will encourage young people's engagement with the new health-care providers to improve health outcomes. Joint clinics between paediatric and adult health-care teams can improve the transfer of individual patient knowledge, promote a collaborative approach to patient care, facilitate continuity of care and build confidence from both medical and patient perspectives. Including patients in decision-making processes around transition services will encourage youth-focused service developments that will help achieve optimal outcomes in young people with chronic illness.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1445-5994.2007.01440.x" target="_blank" rel="noreferrer">10.1111/j.1445-5994.2007.01440.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
2007
Adolescent
Adolescent Transitions
Adult
Age Factors
Australia
Backlog
Chronic Disease
Continuity Of Patient Care/organization & Administration
Delivery of Health Care/organization & administration
Douglass JA
Humans
Internal Medicine Journal
Journal Article
Kennedy A
Pediatrics
Sawyer SM
Self Care
Sloman F
-
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.1651-2227.2007.00566.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1651-2227.2007.00566.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
Missed opportunities-adolescents with a chronic condition (insulin-dependent diabetes mellitus) describe their cigarette-smoking trajectories and consider health risks
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
2007
Subject
The topic of the resource
Female; Humans; Male; Adult; Attitude to Health; Parents; Interviews as Topic; Peer Group; adolescent; Adolescent Transitions; Chronic disease; Adolescent Behavior/psychology; Diabetes Mellitus; Type 1/psychology; Smoking Cessation/psychology; Smoking/adverse effects/prevention & control/psychology; Tobacco Use Disorder/psychology
Creator
An entity primarily responsible for making the resource
Regber S; Kelly KB
Description
An account of the resource
AIM: To enhance our knowledge on why adolescents with a chronic condition (insulin-dependent diabetes mellitus, IDDM) choose to smoke despite possible awareness of health risks. METHODS: Twelve patients aged 15-20 with IDDM who smoked cigarettes volunteered to participate in qualitative interviews. The results were analyzed with content analysis according to Miles and Huberman 1994. RESULTS: One set confirmed what is earlier known on cigarette smoking among adolescents, such as plain exploring, needs to conform with group norms, identity needs and denial of risks. Other themes gave new insights. One was the emotional attitudes-or lack of emotions-expressed by important others, which exerted strong influences on the smoking trajectories. These emotions affected both initiation and motivation for quitting cigarette smoking and seemed crucial as means of meaningful communications concerning smoking. One theme was a flow path of cigarette smoking, which demonstrated opportunities for secondary prevention. Finally, developmental reasons for smoking and motivation for quitting could be described. CONCLUSIONS: There are several windows of opportunities to lower the risk of adolescents with IDDM and other chronic conditions from becoming and remaining smokers, as reported by young people themselves.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1651-2227.2007.00566.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.2007.00566.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
2007
Acta Paediatrica
Adolescent
Adolescent Behavior/psychology
Adolescent Transitions
Adult
Attitude To Health
Backlog
Chronic Disease
Diabetes Mellitus
Female
Humans
Interviews As Topic
Journal Article
Kelly KB
Male
Parents
Peer Group
Regber S
Smoking Cessation/psychology
Smoking/adverse effects/prevention & control/psychology
Tobacco Use Disorder/psychology
Type 1/psychology
-
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/10.1136/adc.2006.103721" target="_blank" rel="noreferrer">http://doi.org/10.1136/adc.2006.103721</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
Transition of care from paediatric to adult services: one part of improved health services for adolescents
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
2008
Subject
The topic of the resource
Humans; Great Britain; Quality of Health Care; adolescent; Adolescent Transitions; Continuity of Patient Care/standards; Adolescent Health Services/standards; Delivery of Health Care/standards; State Medicine/standards
Creator
An entity primarily responsible for making the resource
Viner RM
Description
An account of the resource
Ensuring a safe and effective transition of young people with chronic illness and disability from paediatric care to adult health services is a key quality issue for the NHS. To achieve this, three elements must be pursued with vigour. Firstly, a cultural shift in NHS staff attitudes and training is required. Secondly, systems must change to ensure that all paediatric chronic illness and disability services have effective transition programmes in place. Thirdly, young patients need to be trained and empowered to allow them to be an effective partner in their own transition. Improvement of this transition is merely one part of a wider need to improve health care for adolescents.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/adc.2006.103721" target="_blank" rel="noreferrer">10.1136/adc.2006.103721</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
Adolescent
Adolescent Health Services/standards
Adolescent Transitions
Archives of Disease in Childhood
Backlog
Continuity of Patient Care/standards
Delivery of Health Care/standards
Great Britain
Humans
Journal Article
Quality Of Health Care
State Medicine/standards
Viner RM
-
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/10.1136/adc.2006.103812" target="_blank" rel="noreferrer">http://doi.org/10.1136/adc.2006.103812</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
Transition of care from paediatric to adult services in cardiology
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
2007
Subject
The topic of the resource
Child; Female; Humans; Male; Pediatrics; Adult; adolescent; Adolescent Transitions; Heart Defects; Continuity of Patient Care/standards; Cardiology/organization & administration; Congenital/psychology/therapy; Delivery of Health Care/ethics/standards
Creator
An entity primarily responsible for making the resource
Hudsmith LE; Thorne SA
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/adc.2006.103812" target="_blank" rel="noreferrer">10.1136/adc.2006.103812</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
2007
2007
Adolescent
Adolescent Transitions
Adult
Archives of Disease in Childhood
Backlog
Cardiology/organization & administration
Child
Congenital/psychology/therapy
Continuity of Patient Care/standards
Delivery of Health Care/ethics/standards
Female
Heart Defects
Hudsmith LE
Humans
Journal Article
Male
Pediatrics
Thorne SA
-
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/10.1136/adc.2008.143578" target="_blank" rel="noreferrer">http://doi.org/10.1136/adc.2008.143578</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
Cystic fibrosis and the transition to adult health services
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
2008
Subject
The topic of the resource
Child; Female; Humans; Male; Adult; adolescent; Adolescent Transitions; Continuity of Patient Care/organization & administration; Health Care Costs/statistics & numerical data; Delivery of Health Care/organization & administration; Great Britain/epidemiology; Child Health Services/organization & administration; Cystic Fibrosis/complications/economics/mortality/therapy; State Medicine/economics
Creator
An entity primarily responsible for making the resource
Hewer SC; Tyrrell J
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/adc.2008.143578" target="_blank" rel="noreferrer">10.1136/adc.2008.143578</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
2008
2008
Adolescent
Adolescent Transitions
Adult
Archives of Disease in Childhood
Backlog
Child
Child Health Services/organization & administration
Continuity Of Patient Care/organization & Administration
Cystic Fibrosis/complications/economics/mortality/therapy
Delivery of Health Care/organization & administration
Female
Great Britain/epidemiology
Health Care Costs/statistics & numerical data
Hewer SC
Humans
Journal Article
Male
State Medicine/economics
Tyrrell J
-
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/10.1161/CIRCULATIONAHA.106.627224" target="_blank" rel="noreferrer">http://doi.org/10.1161/CIRCULATIONAHA.106.627224</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
Congenital heart disease in the general population: changing prevalence and age distribution
Publisher
An entity responsible for making the resource available
Circulation
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; Cohort Studies; Adult; Prevalence; Middle Aged; Quebec; adolescent; Preschool; Adolescent Transitions; Heart Defects; Age Distribution; Databases; Congenital/epidemiology; Population; Factual/trends
Creator
An entity primarily responsible for making the resource
Marelli AJ; Mackie AS; Ionescu-Ittu R; Rahme E; Pilote L
Description
An account of the resource
BACKGROUND: Empirical data on the changing epidemiology of congenital heart disease (CHD) are scant. We determined the prevalence, age distribution, and proportion of adults and children with severe and other forms of CHD in the general population from 1985 to 2000. METHODS AND RESULTS: Where healthcare access is universal, we used administrative databases that systematically recorded all diagnoses and claims. Diagnostic codes conformed to the International Classification of Disease, ninth revision. Severe CHD was defined as tetralogy of Fallot, truncus arteriosus, transposition complexes, endocardial cushion defects, and univentricular heart. Prevalence of severe and other CHD lesions was determined in 1985, 1990, 1995, and 2000 using population numbers in Quebec. Children were subjects <18 years of age. The prevalence was 4.09 per 1000 adults in the year 2000 for all CHD and 0.38 per 1000 (9%) for those with severe lesions. Female subjects accounted for 57% of the adult CHD population. The median age of all patients with severe CHD was 11 years (interquartile range, 4 to 22 years) in 1985 and 17 years (interquartile range, 10 to 28 years) in 2000 (P<0.0001). The prevalence of severe CHD increased from 1985 to 2000, but the increase in adults was significantly higher than that observed in children. In the year 2000, 49% of those alive with severe CHD were adults. CONCLUSIONS: The prevalence in adults and median age of patients with severe CHD increased in the general population from 1985 to 2000. In 2000, there were nearly equal numbers of adults and children with severe CHD.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1161/CIRCULATIONAHA.106.627224" target="_blank" rel="noreferrer">10.1161/CIRCULATIONAHA.106.627224</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
Adolescent Transitions
Adult
Age Distribution
Backlog
Child
Circulation
Cohort Studies
Congenital/epidemiology
Databases
Factual/trends
Female
Heart Defects
Humans
Ionescu-Ittu R
Journal Article
Mackie AS
Male
Marelli AJ
Middle Aged
Pilote L
Population
Preschool
Prevalence
Quebec
Rahme E
-
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/10.1177/0009922807310938" target="_blank" rel="noreferrer">http://doi.org/10.1177/0009922807310938</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
Survey of primary care pediatricians on the transition and transfer of adolescents to adult health care
Publisher
An entity responsible for making the resource available
Clinical Pediatrics
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; Adult; Questionnaires; Rhode Island; adolescent; Adolescent Transitions; Patient Transfer/statistics & numerical data; Health Services Accessibility/statistics & numerical data; Health Services Needs and Demand/statistics & numerical data; Adolescent Health Services/organization & administration/statistics & numerical data; Health Care Surveys/methods/statistics & numerical data; Pediatrics/organization & administration/statistics & numerical data; Primary Health Care/organization & administration/statistics & numerical data; Transfer Agreement/organization & administration/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Burke R; Spoerri M; Price A; Cardosi AM; Flanagan P
Description
An account of the resource
The transition and transfer from pediatrics to adult health care of youth with and without special health care needs has become a focus of professional organizations, health care insurers, national policy makers, and providers. To understand transition and transfer at a primary care practice level, all primary care pediatricians in Rhode Island were surveyed. Responses were received from 103 of 169 (60.9%) practicing pediatricians. Few responders had practice policies on transfer. Most reported that transition should begin later than recommended. Few practices communicated with adult providers at transfer. Most reported that health insurers were of little help in transfer. Many pediatric practices had young adults after age 22 and many with special needs. Responders reported adolescents left their practices by 1 of 6 methods. The survey indicates the need for further study of transition and transfer and the need for additional training and education if transfers are to be successful.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0009922807310938" target="_blank" rel="noreferrer">10.1177/0009922807310938</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
Adolescent
Adolescent Health Services/organization & administration/statistics & numerical data
Adolescent Transitions
Adult
Backlog
Burke R
Cardosi AM
Clinical Pediatrics
Flanagan P
Health Care Surveys/methods/statistics & numerical data
Health Services Accessibility/statistics & numerical data
Health Services Needs and Demand/statistics & numerical data
Humans
Journal Article
Patient Transfer/statistics & numerical data
Pediatrics/organization & administration/statistics & numerical data
Price A
Primary Health Care/organization & administration/statistics & numerical data
Questionnaires
Rhode Island
Spoerri M
Transfer Agreement/organization & administration/statistics & numerical data