Jennifer Gerardin¹, Cheryl Raskind‐Hood², Fred H. Rodriguez^3,4, Trenton Hoffman², Andreas Kalogeropoulos⁵, Carol Hogue², Wendy Book³

Congenital Heart Disease, Vol.14, No.4, pp. 541-548, 2019, DOI:10.1111/chd.12780

Abstract Objective: Transfer of congenital heart disease care from the pediatric to adult set‐ ting has been identified as a priority and is associated with better outcomes. Our objective is to determine what percentage of patients with congenital heart disease transferred to adult congenital cardiac care.
Design: A retrospective cohort study.
Setting: Referrals to a tertiary referral center for adult congenital heart disease pa‐ tients from its pediatric referral base.
Patients: This resulted in 1514 patients age 16‐30, seen at least once in three pediat‐ ric Georgia health care systems during 2008‐2010.
Interventions: We analyzed for protective factors associated with age‐appropriate… More >

Lisa X. Deng¹, Lacey P. Gleason², Katherine Awh², Abigail May Khan³, David Drajpuch^2,4, Stephanie Fuller⁵, Leah A. Goldberg², Christopher E. Mascio⁵, Sara L. Partington^2,4, Lynda Tobin^2,4, Adrienne H. Kovacs³, Yuli Y. Kim^2,4

Congenital Heart Disease, Vol.14, No.4, pp. 534-540, 2019, DOI:10.1111/chd.12778

Abstract Objective: To investigate the experiences and communication preferences of adult patients with congenital heart disease (CHD) in the domains of employment, insur‐ ance, and family planning.
Design: Patients ≥ 18 years of age completed a questionnaire about experiences and communication preferences regarding employment, health insurance, and family planning.
Results: Of 152 patients (median age = 33 years, 50% female, 35% with CHD of great complexity), one in four reported work‐related problems due to CHD and a quar‐ ter also recalled a previous gap in health insurance. Of females, 29% experienced an unplanned pregnancy. The median importance of discussion… More >

Fatima M. Ezzeddine¹, Tabitha Moe², Georges Ephrem³, William Aaron Kay³

Congenital Heart Disease, Vol.14, No.4, pp. 511-516, 2019, DOI:10.1111/chd.12771

Abstract Background: Delivery of care to the adult congenital heart disease (ACHD) popula‐ tion has been limited by a shortage in the ACHD physician resources. There is limited data regarding the adequacy of the ACHD physician resources in the United States and our population estimates are extrapolated from Canadian data. Therefore, we proposed to evaluate the adequacy of ACHD physician: patient ratios in the United States at both national and regional levels.
Methods: Data from the Adult Congenital Heart Association (ACHA) website along with metropolitan area and statewide population data from 2016 US Census Bureau estimates were analyzed.… More >

Madalena Coutinho Cruz¹, André Viveiros Monteiro¹, Guilherme Portugal¹, Sérgio Laranjo², Ana Lousinha¹, Bruno Valente¹, Paulo Osório¹, Pedro Silva Cunha¹, Lídia de Sousa¹, José Alberto Oliveira¹, Ana Agapito¹, Mário Martins Oliveira¹, Fátima Pinto², Rui Cruz Ferreira¹

Congenital Heart Disease, Vol.14, No.4, pp. 525-533, 2019, DOI:10.1111/chd.12767

Abstract Objective: Sudden cardiac death is common in the adult congenital heart disease (ACHD) population. Knowledge and experience about the use of implantable cardio‐ verter defibrillators (ICD) in ACHD patients is very limited. We aimed to characterize a cohort of patients with ACHD and ICDs.
Design: Thirty consecutive ACHD patients submitted to an ICD implantation in a single tertiary center were evaluated. Data on baseline clinical features, heart defect, indication for ICD, type of device, appropriate therapies, ICD‐related complication, and mortality during follow‐up were collected.
Results: Of the 30 patients, 56.7% received appropriate therapies due to ventricular tachycardia (VT)… More >

Jenny Alenius Dahlqvist¹, Jan Sunnegårdh², Katarina Hanséus³, Eva Strömvall Larsson², Anders Nygren², Magnus Dalén^4,5, Håkan Berggren⁶, Jens Johansson Ramgren⁷, Urban Wiklund⁸, Annika Rydberg¹

Congenital Heart Disease, Vol.14, No.4, pp. 582-589, 2019, DOI:10.1111/chd.12766

Abstract Objective: Fontan surgery is performed in children with univentricular heart defects. Previous data regarding permanent pacemaker implantation frequency and indica‐ tions in Fontan patients are limited and conflicting. We examined the prevalence of and risk factors for pacemaker treatment in a consecutive national cohort of patients after Fontan surgery in Sweden.
Methods: We retrospectively reviewed all Swedish patients who underwent Fontan surgery from 1982 to 2017 (n = 599).
Results: After a mean follow‐up of 12.2 years, 13% (78/599) of the patients with Fontan circulation had received pacemakers. Patients operated with the extracardiac conduit (EC) type of total… More >

Stephen J. Dolgner^1,2,3, Eric V. Krieger^1,3, Jacob Wilkes⁴, Susan L. Bratton⁵, Ravi R. Thiagarajan^6,7, Cindy S. Barrett⁸, Titus Chan^1,2,9

Congenital Heart Disease, Vol.14, No.4, pp. 559-570, 2019, DOI:10.1111/chd.12758

Abstract Objective: Adult congenital heart disease (ACHD) patients who undergo cardiac surgery are at risk for poor outcomes, including extracorporeal membrane oxygenation support (ECMO) and death. Prior studies have demonstrated risk factors for mortality, but have not fully examined risk factors for ECMO or death without ECMO (DWE). We sought to identify risk factors for ECMO and DWE in adults undergoing congenital heart surgery in tertiary care children’s hospitals.
Design: All adults (≥18 years) undergoing congenital heart surgery in the Pediatric Health Information System (PHIS) database between 2003 and 2014 were included. Patients were classified into three groups:… More >

Amy Sanyahumbi¹, Andrea Beaton², Danielle Guffey³, Mina C. Hosseinipour⁴, Melissa Karlsten¹, Charles G. Minard³, Daniel J. Penny¹, Craig A. Sable⁵, Peter N. Kazembe⁶

Congenital Heart Disease, Vol.14, No.4, pp. 614-618, 2019, DOI:10.1111/chd.12756

Abstract Background: In asymptomatic children, screening echocardiography has been used to attempt to diagnose rheumatic heart disease (RHD) at an early stage (latent RHD). World Heart Federation guidelines have standardized categorization of “definite,” “borderline,” or no RHD by echo findings. The progression of RHD diagnosed through echo screening is not known. In 2014, we screened 1450 schoolchildren in Malawi.
Objective: Our objective was to evaluate 2‐year RHD evolution among those diag‐ nosed through screening.
Methods: Two‐year follow‐up echocardiograms of those diagnosed with latent RHD were read by a primary, secondary, then third reader if there was disagreement. Progression or… More >

Jeremy M. Steele^1,2, Tamar J. Preminger⁴, Francine G. Erenberg², Lu Wang³, Katherine Dell², Tarek Alsaied¹, Kenneth G. Zahka²

Congenital Heart Disease, Vol.14, No.4, pp. 517-524, 2019, DOI:10.1111/chd.12754

Abstract Objectives: To determine the prevalence, age of onset, and risk factors for overweight and obesity in children with congenital heart disease (CHD).
Study Design: Children with CHD who were seen at our institution from 1996 to 2017 were studied. Patients were full-time residents of the United States and were receiving all cardiac care at our institution. Patients were categorized by age and CHD diagnosis. The date of last normal weight for age and the date of first recorded weight in the range of overweight and obese were documented.
Results: Nine hundred sixty-eight patients with CHD were included. The More >

Dana Y. Fuhrman^1,2, Lan Nguyen³, Morgan Hindes³, John A. Kellum²

Congenital Heart Disease, Vol.14, No.6, pp. 963-967, 2019, DOI:10.1111/chd.12862

Abstract Background: There are significant implications for kidney disease in young adults with congenital heart disease. Prior investigations have not focused on the use of urinary tubular biomarkers for the early identification of kidney disease in this growing patient group.
Objective: Determine if young adults with congenital heart disease have differences in the baseline concentration of urinary tubular biomarkers when compared to healthy young adults.
Design/Methods: In a pilot case control study, 30 patients from 18 to 35 years of age with congenital heart disease and a normal serum creatinine were recruited during a routine follow-up visit. In the… More >

Nadya Golfenshtein¹, Alexandra L. Hanlon², Janet A. Deatrick³, Barbara Medoff‐Cooper^3,4

Congenital Heart Disease, Vol.14, No.6, pp. 1113-1122, 2019, DOI:10.1111/chd.12858

Abstract Objective: Parents of infants with congenital heart disease (CHD) experience increased parenting stress levels, potentially interfering with parenting practices and bear adverse family outcomes. Condition severity has been linked to parenting stress. The current study aimed to explore parenting stress trajectories over infancy in parents of infants with complex CHD, and to compare them by post‐operative cardiac physiology.
Design: Data from a larger prospective cohort study was analyzed using longitudinal mixed‐effects regression modeling.
Setting: Cardiac intensive care unit and outpatient clinic of a 480‐bed children's hospital in the American North‐Atlantic region.
Participants: Parents of infants with complex CHD (n… More >