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  • Open Access

    ARTICLE

    Changing prevalence of severe congenital heart disease: Results from the National Register for Congenital Heart Defects in Germany

    Constanze Pfitzer1,2,3, Paul C. Helm4, Hannah Ferentzi1,5, Lisa-Maria Rosenthal1, Ulrike M. M. Bauer4,6, Felix Berger1,3,7, Katharina R. L. Schmitt1,3

    Congenital Heart Disease, Vol.12, No.6, pp. 787-793, 2017, DOI:10.1111/chd.12515

    Abstract Objective: To assess the prevalence of congenital heart disease (CHD) in Germany in relation to phenotypes, severity and gender.
    Design: Cross-sectional registry study.
    Setting: We analyzed data from patients with CHD born between 1996 and 2015.
    Patients: A total of 26 630 patients, registered with the NRCHD, were born between 1996 and 2015. 10 927 patients were excluded from the current analysis due to prior registration with the NRCHD under the German PAN Prevalence Study, which showed a potential bias in the inclusion of this patient population (proportion of mild cardiac lesions was comparatively high due to improved diagnostic… More >

  • Open Access

    ARTICLE

    Preparing adolescents with heart problems for transition to adult care, 2009–2010 National Survey of Children with Special Health Care Needs

    Karrie F. Downing1,2, Matthew E. Oster1,3, Sherry L. Farr1

    Congenital Heart Disease, Vol.12, No.4, pp. 497-506, 2017, DOI:10.1111/chd.12476

    Abstract Objective: A substantial percentage of children with congenital heart disease (CHD) fail to transfer to adult care, resulting in increased risk of morbidity and mortality. Transition planning discussions with a provider may increase rates of transfer, yet little is known about frequency and content of these discussions. We assessed prevalence and predictors of transition-related discussions between providers and parents of children with special healthcare needs (CSHCN) and heart problems, including CHD.
    Design: Using parent-reported data on 12- to 17-year-olds from the 2009–2010 National Survey of CSHCN, we calculated adjusted prevalence ratios (aPR) for associations between demographic factors… More >

  • Open Access

    ARTICLE

    Rates of autism and potential risk factors in children with congenital heart defects

    Jessica L. Bean Jaworski, Thomas Flynn, Nancy Burnham, Jesse L. Chittams, Therese Sammarco, Marsha Gerdes, Judy C. Bernbaum, Robert R. Clancy, Cynthia B. Solot, Elaine H. Zackai, Donna M. McDonald-McGinn, J. William Gaynor

    Congenital Heart Disease, Vol.12, No.4, pp. 421-429, 2017, DOI:10.1111/chd.12461

    Abstract Objective: Atypical development, behavioral difficulties, and academic underachievement are common morbidities in children with a history of congenital heart defects and impact quality of life. Language and social-cognitive deficits have been described, which are associated with autism spectrum disorders. The current study aimed to assess the rates of autism spectrum disorders in a large sample of children with a history of congenital heart defects and to assess medical, behavioral, and individual factors that may be associated with the risk of autism spectrum disorders.
    Design: Participants included 195 children with a history of congenital heart defects, who are… More >

  • Open Access

    ARTICLE

    Incidence, morphology, and progression of bicuspid aortic valve in pediatric and young adult subjects with coexisting congenital heart defects

    Talha Niaz1, Joseph T. Poterucha1, Jonathan N. Johnson1,2, Cecilia Craviari1, Thomas Nienaber1, Jared Palfreeman1, Frank Cetta1,2, Donald J. Hagler1,2

    Congenital Heart Disease, Vol.12, No.3, pp. 261-269, 2017, DOI:10.1111/chd.12429

    Abstract Background: Bicuspid aortic valve (BAV) occurs both as an isolated cardiac lesion and in association with congenital heart defects (CHD). Their aim was to identify the incidence and morphology of BAV in patients with coexisting CHD and compare their disease progression to patients with isolated BAV.
    Methods: The Mayo Clinic echocardiography database was retrospectively analyzed to identify pediatric and young adult patients (≤22 years) who were diagnosed with BAV from 1990 to 2015. The morphology of BAV was determined from the echocardiographic studies before any intervention.
    Results: Overall, 1010 patients with BAV were identified, 619 (61%) with isolated… More >

  • Open Access

    ARTICLE

    Ability of noninvasive criteria to predict hemodynamically significant aortic obstruction in adults with coarctation of the aorta

    Marco Astengo1,2*, Caroline Berntsson3*, Åse A. Johnsson3,4, Peter Eriksson1,2, Mikael Dellborg1,2

    Congenital Heart Disease, Vol.12, No.2, pp. 174-180, 2017, DOI:10.1111/chd.12424

    Abstract Objective: Coarctation of the aorta (CoA) is a common condition. Adult patients with newly diagnosed CoA and patients with recurring or residual CoA require evaluation of the severity of aortic obstruction. Cardiac catheterization is considered the gold standard for the evaluation of hemodynamically significant CoA. The European Society of Cardiology (ESC) Guidelines for the management of grown-up congenital heart disease (GUCH) include noninvasive criteria for identifying significant CoA. Our aim was to investigate the ability of the Class I and Class IIa ESC recommendations to identify significant CoA at cardiac catheterization.
    Design: Sixty-six adult patients with native… More >

  • Open Access

    ARTICLE

    Use of 3D models of congenital heart disease as an education tool for cardiac nurses

    Giovanni Biglino1,2, Claudio Capelli2,3, Despina Koniordou3, Di Robertshaw2, Lindsay-Kay Leaver2, Silvia Schievano2,3, Andrew M. Taylor2,3, Jo Wray2

    Congenital Heart Disease, Vol.12, No.1, pp. 113-118, 2017

    Abstract Background: Nurse education and training are key to providing congenital heart disease (CHD) patients with consistent high standards of care as well as enabling career progression. One approach for improving educational experience is the use of 3D patient-specific models.
    Objectives: To gather pilot data to assess the feasibility of using 3D models of CHD during a training course for cardiac nurses; to evaluate the potential of 3D models in this context, from the nurses’ perspective; and to identify possible improvements to optimise their use for teaching.
    Design: A cross-sectional survey.
    Setting: A national training week for cardiac nurses.
    Participants: One… More >

  • Open Access

    ARTICLE

    Neurocognitive and executive functioning in adult survivors of congenital heart disease

    Leda Klouda1, Wayne J. Franklin1, Anita Saraf1,2, Dhaval R. Parekh1, David D. Schwartz3

    Congenital Heart Disease, Vol.12, No.1, pp. 91-98, 2017

    Abstract Objective: Congenital heart disease (CHD) can affect the developing central nervous system, resulting in neurocognitive and behavioral deficits. Preoperative neurological abnormalities as well as sequelae of the open heart operations required to correct structural abnormalities of the heart contribute to these deficits. There are few studies examining the neurocognitive functioning of adults with CHD. This study sought to investigate multiple domains of neurocognitive functioning in adult survivors of CHD who had childhood cardiac surgery with either moderate or severe disease complexity.
    Design: A total of 48 adults (18–49 years of age) who had undergone cardiac surgery for… More >

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