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
Humans; United States; Adult; Adolescent Transitions; Heart Defects; Congenital/therapy; Heart Diseases/congenital/therapy; American Heart Association; Cardiology/methods/standards
2008
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
Journal Of The American College Of Cardiology
2008
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).
Journal Article
<a href="http://doi.org/10.1016/j.jacc.2008.10.001" target="_blank" rel="noreferrer">10.1016/j.jacc.2008.10.001</a>
Changing mortality in congenital heart disease
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
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
Khairy P; Ionescu-Ittu R; Mackie AS; Abrahamowicz M; Pilote L; Marelli AJ
Journal Of The American College Of Cardiology
2010
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).
Journal Article
<a href="http://doi.org/10.1016/j.jacc.2010.03.085" target="_blank" rel="noreferrer">10.1016/j.jacc.2010.03.085</a>
Variations in adult congenital heart disease training in adult and pediatric cardiology fellowship programs
Child; Humans; United States; Adult; Data Collection; Education; Program Evaluation; Fellowships and Scholarships; Medical; Models; Adolescent Transitions; Educational; Pediatrics/education; Heart Defects; Congenital; Cardiology/education; Graduate/economics/standards
OBJECTIVES: The purpose of this study was to evaluate adult congenital heart disease (CHD) training among U.S. cardiology fellowship programs. BACKGROUND: Although training recommendations for caring for adults with CHD exist, the educational patterns and numbers of specialists remain unknown. METHODS: We surveyed U.S. directors of 170 adult cardiology and 45 pediatric cardiology (PC) fellowship programs. Adult program surveys contained 1 single-response and 10 multiple-choice questions; pediatric program surveys contained 1 single-response and 13 multiple-choice questions. RESULTS: Ninety-four adult cardiology fellowship directors (55%) and 34 PC directors (76%) responded. Of adult programs, 70% were in university hospitals and 40% were associated with PC groups. Those with PC-affiliation had more adult CHD clinics (p < 0.02) and more adult CHD inpatient (p < 0.02) and outpatient (p < 0.002) visits than those without PC affiliation. Most PC programs were in children's hospitals (38%) or children's hospitals within adult hospitals (50%). Eighty-two percent had associated adult cardiology programs. Pediatric programs followed adult CHD patients in various care settings. Over one-third of adult and pediatric programs had < or = 3 lectures annually regarding adult CHD. Nine adult and 2 pediatric programs offered adult CHD fellowships, and only 31 adult and 11 pediatric fellows pursued advanced CHD training in the last 10 years. CONCLUSIONS: Adult CHD didactic and clinical experiences for cardiology fellows vary widely. Few programs offer advanced CHD training, and the number of specially trained physicians is unlikely to meet projected workforce requirements. Adult cardiology programs with PC affiliation have increased CHD experience and might provide good educational models.
2005
Gurvitz MZ; Chang RK; Ramos FJ; Allada V; Child JS; Klitzner TS
Journal Of The American College Of Cardiology
2005
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).
Journal Article
<a href="http://doi.org/10.1016/j.jacc.2005.05.062" target="_blank" rel="noreferrer">10.1016/j.jacc.2005.05.062</a>
ACCF/AHA/AAP recommendations for training in pediatric cardiology. Task force 6: training in transition of adolescent care and care of the adult with congenital heart disease
Humans; United States; Adult; Age Factors; adolescent; Adolescent Transitions; Pediatrics/education; Cardiology/education; Heart Diseases/congenital/therapy
2005
Murphy DJ; Foster E; American College of Cardiology Foundation; American Heart Association; American College of Physicians Task Force on Clinical Competence (ACC/AHA/AAP Writing Committee to Develop Training Recommendations for Pediatric Cardiology)
Journal Of The American College Of Cardiology
2005
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).
Journal Article
<a href="http://doi.org/10.1016/j.jacc.2005.07.020" target="_blank" rel="noreferrer">10.1016/j.jacc.2005.07.020</a>
Estimates of life expectancy by adolescents and young adults with congenital heart disease
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
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
Reid GJ; Webb GD; Barzel M; McCrindle BW; Irvine MJ; Siu SC
Journal Of The American College Of Cardiology
2006
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).
Journal Article
<a href="http://doi.org/10.1016/j.jacc.2006.03.041" target="_blank" rel="noreferrer">10.1016/j.jacc.2006.03.041</a>
Report of the National Heart, Lung, and Blood Institute Working Group on research in adult congenital heart disease.
Adult; Risk Factors; Research; Medical; Adolescent Transitions; Heart Defects; Human; Cardiology/education; Cardiology -- Manpower; Congenital -- Diagnosis; Congenital/therapy; Tetralogy of Fallot -- Diagnosis; Tetralogy of Fallot -- Therapy; Transposition of Great Vessels -- Diagnosis; Transposition of Great Vessels -- Therapy
2006
Williams RG; Pearson GD; Barst RJ; Child JS; del Nido P; Gersony WM; Kuehl KS; Landzberg MJ; Myerson M; Neish SR; Sahn DJ; Verstappen A; Warnes CA; Webb CL
Journal Of The American College Of Cardiology
2006
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).
Journal Article
Task force 1: the changing profile of congenital heart disease in adult life
Child; Cross-Sectional Studies; Female; Humans; infant; Male; Survival Rate; Adult; Prognosis; Aged; Middle Aged; Incidence; adolescent; Preschool; patient care team; infant; Adolescent Transitions; Newborn; United States/epidemiology; Heart Defects; Congenital/mortality/rehabilitation; Great Britain/epidemiology
2001
Warnes CA; Liberthson R; Danielson GK; Dore A; Harris L; Hoffman JI; Somerville J; Williams RG; Webb GD
Journal Of The American College Of Cardiology
2001
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).
Journal Article
<a href="http://doi.org/10.1016/s0735-1097(01)01272-4" target="_blank" rel="noreferrer">10.1016/s0735-1097(01)01272-4</a>
Task force 5: adults with congenital heart disease: access to care
Humans; United States; Adult; adolescent; Adolescent Transitions; Heart Defects; Health Care Costs/statistics & numerical data; Congenital/economics/rehabilitation; Health Services Accessibility/economics/legislation & jurisprudence; Insurance Coverage/economics/legislation & jurisprudence; Managed Care Programs/economics/legislation & jurisprudence; Patient Care Team/economics/legislation & jurisprudence; Rehabilitation; Vocational/economics
2001
Skorton DJ; Garson A; Allen HD; Fox JM; Truesdell SC; Webb GD; Williams RG
Journal Of The American College Of Cardiology
2001
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).
Journal Article
<a href="http://doi.org/10.1016/s0735-1097(01)01274-8" target="_blank" rel="noreferrer">10.1016/s0735-1097(01)01274-8</a>
Impact Of Early Palliative Care Intervention On Maternal Stress In Mothers Of Infants Prenatally Diagnosed With Single Ventricle Heart Disease: A Randomized Clinical Trial.
Mothers; Communication; Palliative Care; Families & Family Life; Anxieties; Cardiovascular Disease
Background: Children with single ventricle (SV) cardiac defects requiring staged palliation have a high risk of mortality and receive
invasive and complex care, resulting in significant maternal stress. In other complex, life-limiting illnesses among children, pediatric
palliative care (PPC) may mitigate maternal distress. We hypothesized early PPC in the SV population may have the same beneficial effect
upon mothers.
Methods: In this pilot trial of early PPC, mothers of infants with a prenatal diagnosis of SV completed 4 questionnaires measuring anxiety,
depression, coping, and quality of life/family functioning at a prenatal visit (not at initial diagnosis) and again at neonatal discharge. Infants
were randomized to receive early PPC (defined as initial consultation prior to surgery consisting of structured evaluation, psychosocial/
spiritual support, and communication between mothers and care providers) or usual care.
Results: Among 56 eligible subjects, forty mothers enrolled and completed baseline surveys; 38 neonates randomized (18 early PPC, 20
usual care) and 34 postnatal surveys were completed (3 neonates died, 1 mother declined). Baseline Beck Depression Index II and StateTrait
Anxiety Index (STAI) scores exceeded those of a normal pregnant sample (mean 13.76 ± SD 8.46 vs. 7.0 ± 5.0, and 46.34 ± 12.59
vs. 29.8 ± 6.35, respectively; both P=0.0001), but there were no significant differences between study groups. There was a significant
decrease in prenatal to postnatal STAI scores in the early PPC group (-7.6 vs. 0.3 in usual care, P=0.02). Significantly higher postnatal
Brief Cope Inventory scores for positive reframing, an adaptive response, were noted in the early PPC group (P=0.03). The early PPC
group had a positive change in communication and family relationships scores for the Peds QL Family Impact Module (medium effect size
of 0.46 and 0.41, respectively).
Conclusions: In this pilot randomized trial of early PPC, mothers of children with SV heart disease experienced high levels of depression
and anxiety in the prenatal period. Early PPC in the SV population resulted in decreased maternal stress, improved maternal coping, and
improved communication and family relationships.
Hancock H; Pituch K; Uzark K; Bhat P; Fifer C; Silveira M
Journal Of The American College Of Cardiology
2016
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).
doi:10.1016/S0735-1097(16)30921-4