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  • Open Access

    ARTICLE

    Extended cardiac ambulatory rhythm monitoring in adults with congenital heart disease: Arrhythmia detection and impact of extended monitoring

    Karen E. Schultz1, George K. Lui1,2, Doff B. McElhinney1, Jin Long3, Vidhya Balasubramanian3, Charlotte Sakarovitch3, Susan M. Fernandes1,2, Anne M. Dubin1, Ian S. Rogers1,2, Anitra W. Romfh1,2, Kara S. Motonaga1, Mohan N. Viswanathan2, Scott R. Ceresnak1

    Congenital Heart Disease, Vol.14, No.3, pp. 410-418, 2019, DOI:10.1111/chd.12736

    Abstract Background: Arrhythmias are a leading cause of death in adults with congenital heart disease (ACHD). While 24‐48‐hour monitors are often used to assess arrhythmia burden, extended continuous ambulatory rhythm monitors (ECAM) can record 2 weeks of data. The utility of this device and the arrhythmia burden identified beyond 48‐hour monitoring have not been evaluated in the ACHD population. Additionally, the impact of ECAM has not been studied to determine management recommendations.
    Objective: To address the preliminary question, we hypothesized that clinically sig‐ nificant arrhythmias would be detected on ECAM beyond 48 hours and this would lead to clinical management changes.
    More >

  • Open Access

    ARTICLE

    Perspectives on advance care planning and palliative care among adults with congenital heart disease

    Jill M. Steiner1, Karen Stout1, Laurie Soine1, James N. Kirkpatrick1, J. Randall Curtis2

    Congenital Heart Disease, Vol.14, No.3, pp. 403-409, 2019, DOI:10.1111/chd.12735

    Abstract Background: Patients with adult congenital heart disease (ACHD) report that ad‐ vance care planning (ACP) is important, and that they want information about prog‐ nosis. However, recognizing importance and being willing to participate are different constructs, and how and when to begin ACP and palliative care discussions remains ill‐defined.
    Methods: We conducted a cross‐sectional survey of 150 consecutive outpatients to assess willingness to participate in ACP, with whom, and important barriers and facili‐ tators to these discussions.
    Results: The majority of participants (69%) reported being willing to participate in ACP; 79% to have a meeting to discuss goals and care… More >

  • Open Access

    ARTICLE

    Focal liver lesions following Fontan palliation of single ventricle physiology: A radiology‐pathology case series

    Emily M. Engelhardt1, Andrew T. Trout2,3, Rachel M. Sheridan4, Gruschen R. Veldtman5, Jonathan R. Dillman2,3

    Congenital Heart Disease, Vol.14, No.3, pp. 380-388, 2019, DOI:10.1111/chd.12730

    Abstract Purpose: Patients who have undergone Fontan palliation of single ventricle physiol‐ ogy congenital heart disease are prone to developing focal liver lesions. In our experi‐ ence, the variety of lesions occurring in this population is greater than that described in the literature. The purpose of this study was to describe the breadth of biopsy‐ proven liver lesions in patients post–Fontan palliation of single ventricle physiology cared for at our institution.
    Methods: We retrospectively identified patients who had previously undergone the Fontan operation and had a focal liver lesion biopsied between January 2000 and June 2018. Medical records were reviewed for… More >

  • Open Access

    ARTICLE

    Racial disparities in clinic follow‐up early in life among survivors of congenital heart disease

    Jamie L. Jackson1, Jennifer Morack2, Millie Harris2, Jennifer DeSalvo3, Curt J. Daniels4, Deena J. Chisolm2

    Congenital Heart Disease, Vol.14, No.2, pp. 305-310, 2019, DOI:10.1111/chd.12732

    Abstract Objective: The current study aims to identify the rates of lapses in care and loss to follow‐up before age one through age five for white and nonwhite congenital heart disease (CHD) survivors. Nonwhite CHD survivors were hypothesized to experience an earlier lapse in care and be lost to follow‐up than whites.
    Design: Patients were from a large pediatric hospital and had (1) at least one outpa‐ tient cardiology clinic visit or cardiac surgery visit before the age of one and (2) a di‐ agnosis of moderate or complex structural CHD. Cardiology outpatient utilization rates were tracked from before age one… More >

  • Open Access

    ARTICLE

    Leaflet morphology classification of the Melody Transcatheter Pulmonary Valve

    Brian A. Boe, Sharon L. Cheatham, Aimee K. Armstrong, Darren P. Berman, Joanne L. Chisolm, John P. Cheatham

    Congenital Heart Disease, Vol.14, No.2, pp. 297-304, 2019, DOI:10.1111/chd.12728

    Abstract Objective: We sought to describe the leaflet morphology variation in the Melody Transcatheter Pulmonary Valve (TPV) and evaluate associated outcomes. The Melody TPV is constructed from harvested bovine jugular venous valves which have been rigorously tested. Natural anatomic leaflet variations are seen in the Melody TPV but have not been evaluated.
    Design: A Melody TPV leaflet morphology classification system was devised after reviewing a subset of photographed and implanted TPVs. All images were blindly re‐ viewed by implanters and classified. Midterm hemodynamic outcomes and complica‐ tions of the Melody TPVs were compared by leaflet morphology.
    Results: Photographed Melody TPVs implanted… More >

  • Open Access

    ARTICLE

    Dysrhythmias in patients with a complete atrioventricular septal defect: From surgery to early adulthood

    Charlotte A. Houck1,2, Reinder Evertz3, Christophe P. Teuwen1, Jolien W. Roos‐Hesselink1, Janneke A. E. Kammeraad4, Anthonie L. Duijnhouwer3, Natasja M. S. de Groot3, Ad J. J. C. Bogers2

    Congenital Heart Disease, Vol.14, No.2, pp. 280-287, 2019, DOI:10.1111/chd.12724

    Abstract Objective: Outcomes after surgical repair of complete atrioventricular septal defect (cAVSD) have improved. With advancing age, the risk of development of dysrhythmias may increase. The aims of this study were to (1) examine development of sinus node dysfunction (SND), atrial and ventricular tachyarrhythmias, and (2) study progression of atrioventricular conduction abnormalities in young adult patients with repaired cAVSD.
    Study design: In this retrospective multicenter study, 74 patients (68% female) with a cAVSD repaired in childhood were included. Patients’ medical files were evaluated for occurrence of SND, atrioventricular conduction block (AVB), atrial and ventricular tachyarrhythmias.
    Results: Median age at repair was… More >

  • Open Access

    ARTICLE

    Prevalence of Noonan spectrum disorders in a pediatric population with valvar pulmonary stenosis

    Kailyn Anderson1, James Cnota2,3, Jeanne James4,5, Erin M. Miller2,3, Ashley Parrott3, Valentina Pilipenko1,2, Kathryn Nicole Weaver1,2, Amy Shikany3

    Congenital Heart Disease, Vol.14, No.2, pp. 264-273, 2019, DOI:10.1111/chd.12721

    Abstract Objective: To evaluate the prevalence of Noonan spectrum disorders (NSD) in a pediatric population with valvar pulmonary stenosis (vPS) and identify the clinical characteristics that differentiate those with NSD from those without NSD.
    Design: A retrospective chart review of 204 patients diagnosed with vPS between 9/1/2012 and 12/1/2016 at a pediatric medical center was performed. The quantitative features of vPS, genetic diagnosis information, and phenotypic characteristics of Noonan syndrome were collected. Chi‐square test, Fisher’s exact test, t test, Wilcoxon rank‐sum test, and ANOVA were used for comparisons among the groups. Logistic regression was used to test for the association between… More >

  • Open Access

    ARTICLE

    Vasopressor magnitude predicts poor outcome in adults with congenital heart disease after cardiac surgery

    Joseph T. Poterucha1, Saraschandra Vallabhajosyula2, Alexander C. Egbe2, Joseph S. Krien3, Devon O. Aganga4, Kimberly Holst5, Adele W. Golden6, Joseph A. Dearani5, Sheri S. Crow4

    Congenital Heart Disease, Vol.14, No.2, pp. 193-200, 2019, DOI:10.1111/chd.12717

    Abstract Background: High levels of vasoactive inotrope support (VIS) after congenital heart surgery are predictive of morbidity in pediatric patients. We sought to discern if this relationship applies to adults with congenital heart disease (ACHD).
    Methods: We retrospectively studied adult patients (≥18 years old) admitted to the intensive care unit after cardiac surgery for congenital heart disease from 2002 to 2013 at Mayo Clinic. Vasoactive medication dose values within 96 hours of admis‐ sion were examined to determine the relationship between VIS score and poor out‐ come of early mortality, early morbidity, or complication related morbidity.
    Results: Overall, 1040 ACHD patients… More >

  • Open Access

    ARTICLE

    Historical investigation of medical treatment for adult congenital heart disease: A Canadian perspective

    Jennifer L. Lapum1, Suzanne Fredericks1, Barbara Bailey2, Terrence M. Yau3,4, Jennifer Graham5, Ariane J. Marelli6,7

    Congenital Heart Disease, Vol.14, No.2, pp. 185-192, 2019, DOI:10.1111/chd.12716

    Abstract Objective: The number of adults with congenital heart disease (CHD) has increased substantially because of medical advances that are extending life expectancy beyond childhood. A historical investigation is timely not only because of this significant demographic shift, but also because stakeholder engagement is increasingly important in shaping research directions. The study questions were: From the perspective of stakeholders, what is known about the medical treatment for the adult CHD cohort in Canada and how has it changed over time?
    Design/Methods: We harnessed the use of historical research methods and conducted interviews with 21 key informants in order to articulate a… More >

  • Open Access

    ARTICLE

    The long‐term functional outcome in Mustard patients study: Another decade of follow‐up

    Nayan T. Srivastava1,2, Roger Hurwitz3, W. Aaron Kay4, George J. Eckert5, Alisha Kuhlenhoelter6, Nicole DeGrave2, Eric S. Ebenroth2,6

    Congenital Heart Disease, Vol.14, No.2, pp. 176-184, 2019, DOI:10.1111/chd.12698

    Abstract Objective: For over 20 years, we have followed a cohort of patients who underwent the Mustard procedure for d‐transposition of the great arteries. The current study follows the same cohort from our last study in 2007 to reassess their functional ca‐ pacity and quality of life.
    Participants: Of the original 45 patients, six patients have required cardiac transplant and 10 patients have died, including two of the transplanted patients. Twenty‐five of the remaining patients agreed to participate in this current study.
    Design: Patients underwent comparable testing to the previous studies when possi‐ ble including exercise stress testing, echocardiography, MRI or… More >

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