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Text
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<a href="http://doi.org/10.1542/peds.113.3.e197" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.113.3.e197</a>
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Title
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Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Cross-Sectional Studies; Female; Humans; Male; Adult; Canada; Practice; adolescent; Attitudes; Adolescent Transitions; Pediatrics/statistics & numerical data; Health Knowledge; Heart Defects; Congenital/therapy; Patient Transfer/statistics & numerical data; disabled children; Cardiology/statistics & numerical data; Continuity of Patient Care/statistics & numerical data
Creator
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Irvine MJ; McCrindle BW; Sananes R; Ritvo PG; Siu SC; Webb GD
Description
An account of the resource
OBJECTIVES: More than 85% of children born today with chronic medical conditions will live to adulthood, and many should transfer from pediatric to adult health care. The numbers of adults with congenital heart defects (CHDs) are increasing rapidly. Current guidelines recommend that just over half of adult CHD patients should be seen every 12 to 24 months by a cardiologist with specific CHD expertise at a regional CHD center, because they are at risk for serious complications (eg, reoperation and/or arrhythmias) and premature mortality. The present study aimed to determine the percent of young adults with CHDs who successfully transferred from pediatric to adult care and examine correlates of successful transfer. DESIGN: Cross-sectional study with prevalence data from an entire cohort. SETTING AND PATIENTS: All patients (n = 360) aged 19 to 21 years with complex CHDs who, according to current practice guidelines, should be seen annually at a specialized adult CHD center were identified from the database of the cardiology program at the Hospital for Sick Children in Toronto, Canada, a pediatric tertiary care center. Of these patients, 234 completed measures about health beliefs, health behaviors, and medical care since age 18 years. MAIN OUTCOME MEASURE: All 15 specialized adult CHD centers in Canada formed the Canadian Adult Congenital Heart (CACH) Network. Attendance for at least 1 follow-up appointment at a CACH center before the age of 22 years was ascertained for all eligible patients. Attendance at a CACH center provides a clear criterion for successful transfer. RESULTS: In the total cohort, 47% (95% confidence interval [CI]: 42-52) had transferred successfully to adult care. There was no difference in rates of successful transfer between patients consenting to complete questionnaires (48%) and those who declined (47%). More than one quarter (27%) of the patients reported having had no cardiac appointments since 18 years. In multivariate analyses of the entire cohort, successful transfer was significantly associated with more pediatric cardiovascular surgeries (odds ratio [OR]: 2.47; 95% CI: 1.40-4.37), older age at last visit to the Hospital for Sick Children (OR: 1.29; 95% CI: 1.10-1.51), and documented recommendations in the medical chart for follow-up at a CACH center. In multivariate analyses of the patients completing questionnaires, successful transfer was significantly related to documented recommendations and patient beliefs that adult CHD care should be at a CACH center (OR: 3.64; 95% CI: 1.34-9.90). Comorbid conditions (OR: 3.13; 95% CI: 1.13-8.67), not using substances (eg, binge drinking; OR: 0.18; 95% CI: 0.07-0.50), using dental antibiotic prophylaxis (OR: 4.23; 95% CI: 1.48-12.06), and attending cardiac appointments without parents or siblings (OR: 6.59; 95% CI: 1.61-27.00) also correlated with successful transfer. CONCLUSIONS: This is the first study to document the percent of young adults with a chronic illness who successfully transfer to adult care in a timely manner. Patients were from an entire birth cohort from the largest pediatric cardiac center in Canada, and outcome data were obtained on all eligible patients. Similar data should be obtained for other chronic illnesses. There is need for considerable improvement in the numbers of young adults with CHDs who successfully transfer to adult care. At-risk adolescents with CHDs should begin the transition process before their teens, should be educated in the importance of antibiotic prophylaxis, should be contacted if a follow-up appointment is missed, and should be directed to a specific CHD cardiologist or program, with the planned timing being stated explicitly. Adult care needs to be discussed in the pediatric setting, and patients must acquire appropriate beliefs about adult care well before transfer. Developmentally appropriate, staged discussions involving the patient, with and without parents, throughout adolescence may help patients acquire these beliefs and an understanding of the need for ongoing care. Improved continuity of pediatric care and provision of clear details for adult follow-up might be sufficient to cause substantive improvements in successful transfer. An understanding of why patients drop out of pediatric care may be needed to improve the continuity of care throughout adolescence. Almost one quarter of the patients believed adult care should be somewhere other than at a CACH center despite opposite recommendations. For these patients, a single discussion of adult care during the final pediatric visit may be too little, too late. In addition to earlier discussions, multiple mechanisms such as referral letters and transition clinics are needed. Similarly, patients engaging in multiple risky or poor health behaviors such as substance use may need more intensive programs to make substantial changes in these behaviors, which hopefully would lead to successful transfer. Overall, these data support the view that transition to adult care (a planned process of discussing and preparing for transfer to an adult health center) is important and should begin well before patients are transferred. The future health of adults with chronic conditions may depend on our ability to make these changes.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.113.3.e197" target="_blank" rel="noreferrer">10.1542/peds.113.3.e197</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
2004
Adolescent
Adolescent Transitions
Adult
Attitudes
Backlog
Canada
Cardiology/statistics & numerical data
Congenital/therapy
Continuity Of Patient Care/statistics & Numerical Data
Cross-sectional Studies
Disabled Children
Female
Health Knowledge
Heart Defects
Humans
Irvine MJ
Journal Article
Male
McCrindle BW
Patient Transfer/statistics & numerical data
Pediatrics
Pediatrics/statistics & numerical data
Practice
Ritvo PG
Sananes R
Siu SC
Webb GD
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Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=16484906" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=16484906</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Pediatric in-intensive-care-unit cardiac arrest: incidence, survival, and predictive factors
Publisher
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Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
PedPal Lit
Creator
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de Mos N; van Litsenburg RR; McCrindle BW; Bohn DJ; Parshuram CS
Description
An account of the resource
OBJECTIVE: To describe the incidence, survival, and neurologic outcome of in-intensive-care-unit (ICU) cardiac arrest and to identify factors predictive of survival to hospital discharge. METHODS: We performed a retrospective cohort study. Eligible patients were <18 yrs of age and experienced a cardiac arrest during their admission to a multidisciplinary pediatric intensive care unit in the 5.5-yr period ending June 2002. Cardiac arrest was defined as the administration of chest compressions or defibrillation for a nonperfusing cardiac rhythm. Mortality and the Paediatric Cerebral Performance Score were measured and presented according to the Utstein style. Factors predictive of survival to hospital discharge were identified by univariate analysis and independent predictors were identified by multivariate analysis. MAIN MEASUREMENTS AND RESULTS: Ninety-one children had cardiac arrest, yielding an incidence of 0.94 cardiac arrests per 100 admissions. Resuscitation was successful in 75 (82%) children, 61 (67%) survived 24 hrs, 25 (27%) children survived to ICU discharge and 23 (25%) to hospital discharge. At hospital discharge, the median Pediatric Cerebral Performance Category score was 2 (range, 1-3) and the median Pediatric Overall Performance Category score was 3 (range, 1-4). No child was assessed as normal on both scores. The independent positive predictors of hospital mortality were the presence of renal failure before cardiac arrest (odds ratio [OR], 6.1; 95% confidence interval [CI], 1.8-31), being on epinephrine infusion at time of cardiac arrest (OR, 9.5; 95% CI, 1.5-62), and the administration of one or more calcium boluses during resuscitation (OR, 5.4; 95% CI, 1.1-25). The use of extracorporeal membrane oxygenation (ECMO) within 24 hrs after cardiac arrest was associated with reduced hospital mortality (OR, 0.18; 95% CI, 0.04-0.76). CONCLUSIONS: In-ICU cardiac arrest is associated with high in-hospital mortality and subsequent morbidity in survivors. Prearrest renal dysfunction and epinephrine infusion were associated with increased in-hospital mortality. The use of post-arrest ECMO within 24 hrs was associated with reduced mortality. Rigorous prospective evaluation of the role of ECMO following cardiac arrest is needed.
2006
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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
2006
Backlog
Bohn DJ
Critical Care Medicine
de Mos N
Journal Article
McCrindle BW
Parshuram CS
PedPal Lit
van Litsenburg RR
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Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
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URL Address
<a href="http://doi.org/10.1016/j.jacc.2006.03.041" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jacc.2006.03.041</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Estimates of life expectancy by adolescents and young adults with congenital heart disease
Publisher
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Journal Of The American College Of Cardiology
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Female; Humans; Male; Adult; Logistic Models; Questionnaires; Health Status; Awareness; Health Behavior; Practice; adolescent; Attitudes; Adolescent Transitions; Health Knowledge; Heart Defects; Life Expectancy; Congenital/epidemiology
Creator
An entity primarily responsible for making the resource
Reid GJ; Webb GD; Barzel M; McCrindle BW; Irvine MJ; Siu SC
Description
An account of the resource
OBJECTIVES: This study sought to determine what adolescents and young adults with moderate to complex congenital heart disease (CHD) believe their life span to be and to examine correlates of their beliefs. BACKGROUND: Patients with moderate to complex CHD have a shortened life expectancy. Patients' perceptions of their life expectancy have not been examined. METHODS: Young adults and older adolescents with moderate or complex CHD (n = 296) estimated their own life expectancy and that of healthy peers, and rated their health status and risk of CHD complications. Adults with CHD discussed reasons for life expectancy ratings in an interview. RESULTS: Patients with CHD expected to live to age 75 +/- 11 years, only 4 years less than their healthy peers. Over 85% of patients expected to live longer than our estimates of their life expectancy. Poorer health status and higher perceived risk of CHD complications related to shorter perceived life expectancy. Young adults lacked awareness and understanding of CHD-specific risks, and their life expectancy perceptions often related to risk factors for coronary artery disease. CONCLUSIONS: Patients with moderate to complex CHD expect to live almost as long as their healthy peers. For most patients, this is unlikely. The implications of these beliefs on health behaviors and life choices are unknown, but should be examined. Nevertheless, patients need accurate information delivered in a sensitive manner to make informed life choices regarding education, careers, and family.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jacc.2006.03.041" target="_blank" rel="noreferrer">10.1016/j.jacc.2006.03.041</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2006
Adolescent
Adolescent Transitions
Adult
Attitudes
Awareness
Backlog
Barzel M
Congenital/epidemiology
Female
Health Behavior
Health Knowledge
Health Status
Heart Defects
Humans
Irvine MJ
Journal Article
Journal of the American College of Cardiology
Life Expectancy
Logistic Models
Male
McCrindle BW
Practice
Questionnaires
Reid GJ
Siu SC
Webb GD
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Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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Backlog
URL Address
<a href="http://doi.org/10.1016/j.jtcvs.2014.07.047" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jtcvs.2014.07.047</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Low-weight infants are at increased mortality risk after palliative or corrective cardiac surgery
Publisher
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The Journal Of Thoracic And Cardiovascular Surgery
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
An entity primarily responsible for making the resource
Alsoufi B; Manlhiot C; Mahle WT; Kogon B; Border WL; Cuadrado A; Vincent R; McCrindle BW; Kanter K
Description
An account of the resource
BACKGROUND: Low weight is an established risk factor for mortality after congenital cardiac surgery. Given the advances in the care of neonates and infants after surgery, we sought to examine the effect of low weight on outcomes in the current era. METHODS: From 2002 to 2012, 2051 infants aged 90 days or less underwent cardiac surgery including 534 (26.0%) with single-ventricle pathology. Regression models examined the effect of low weight (≤2.5 kg; n = 274, 13.4%) on early and late outcomes. RESULTS: Overall, the incidence of prematurity, associated chromosomal/extracardiac abnormalities was higher in infants who weighed 2.5 kg or less than in those who weighed more than 2.5 kg; the incidence of single-ventricle pathology was comparable between the 2 groups. In addition, infants who weighed 2.5 kg or less underwent more palliation and had a higher proportion of STAT (Society of Thoracic Surgeons-European Association for Cardio-Thoracic Surgery) risk category 4 and 5 procedures. Adjusted regression models showed that low weight (≤2.5 kg) did not increase unplanned reoperation (odds ratio [OR], 0.90; 95% confidence interval [CI], 0.48-1.67; P = .73) or extracorporeal membrane oxygenation requirement (OR, 1.23; 95% CI, 0.68-2.22; P = .49), however it was associated with significant increase in hospital mortality (OR, 2.15; 95% CI, 1.33-3.50; P = .002). In addition, there was a significant association between low weight and increased duration of postoperative mechanical ventilation and intensive care unit and hospital stays. Adjusted hazard analysis showed that weight equal to or less than 2.5 kg was associated with diminished late survival (hazard ratio, 1.89; 95% CI, 1.39-2.55; P < .001) and that was evident in all patients subgroups (P < .001 for all). CONCLUSIONS: In a large single-center series, low weight continues to be associated with increased early mortality risk and resource utilization after palliative and corrective cardiac surgery. The hazard of death in low-weight patients continues beyond the perioperative period for at least 1 year before normalizing. Strategies to improve outcomes for this high-risk population must address perioperative care, outpatient surveillance, and management.
2014-08
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jtcvs.2014.07.047" target="_blank" rel="noreferrer">10.1016/j.jtcvs.2014.07.047</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2014
Alsoufi B
Backlog
Border WL
Cuadrado A
Journal Article
Kanter K
Kogon B
Mahle WT
Manlhiot C
McCrindle BW
The Journal Of Thoracic And Cardiovascular Surgery
Vincent R