Joshua Saef¹, Sandeep Sodhi¹, Kristen M. Tecson², Vanessa al Rashida¹, Jong Mi Ko², Kamila S. White³, Philip A. Ludbrook¹, Ari M. Cedars⁴

Congenital Heart Disease, Vol.13, No.6, pp. 967-977, 2018, DOI:10.1111/chd.12668

Abstract Objective: Growth in the adults with congenital heart disease (ACHD) population represents a challenge to the health care infrastructure. As patients with chronic disease are increasingly held accountable for their own care, contributors to disease‐ specific health knowledge, which are known to correlate with patients’ participation in care, merit investigation to design patient‐focused interventions.
Design: We conducted a single‐site, cross‐sectional study of ACHD patients. Investigators retrospectively gathered clinical data as well as psychometric and health status assessments completed at the time of enrollment.
Outcome Measures: We investigated the impact of clinical and psychological varia‐ bles on Leuven Knowledge Questionnaire for… More >

Martina Nassif¹, Reindert P. van Steenwijk², Jacqueline M. Hogenhout², Huangling Lu¹, Rianne H.A.C.M. de Bruin‐Bon B Health¹, Alexander Hirsch^1,3, Peter J. Sterk MD, PhD2 | Berto J. Bouma MD, PhD1 | Bart Straver MD, PhD4 | Jan G.P. Tijssen¹, Barbara J.M. Mulder^1,5, Robbert J. de Winter¹

Congenital Heart Disease, Vol.13, No.6, pp. 959-966, 2018, DOI:10.1111/chd.12665

Abstract Objective: The association between secundum atrial septal defects (ASD) and asthma‐ like dyspnea with consequent long‐term pulmonary inhalant use, is poorly understood in adult ASD patients. Airway hyperresponsiveness is suggested to be the underlying mechanism of cardiac asthma from mitral valve disease and ischemic cardiomyopathy. We hypothesized that airway hyperresponsiveness may also be found in adult ASD patients. Our aim was to study airway responsiveness in adult ASD patients before percutaneous closure and at short‐and long‐term postprocedural follow‐up.
Methods: This prospective study included 31 ASD patients (65% female, mean age 49 ± 15y) who underwent spirometry and bronchoprovocation testing pre‐and… More >

Adikan Bhasipol¹, Nopawan Sanjaroensuttikul², Prapaporn Pornsuriyasak³, Sukit Yamwong¹, Tarinee Tangcharoen¹

Congenital Heart Disease, Vol.13, No.6, pp. 952-958, 2018, DOI:10.1111/chd.12659

Abstract Objective: We aimed to study the efficiency and safety of once‐a‐week outpatient rehabilitation followed by home program with tele‐monitoring in patients with com‐ plex cyanotic congenital heart disease.
Design: Prospective nonrandomized study.
Method: Patients who have been diagnosed either Eisenmenger’s syndrome or inop‐ erable complex cyanotic heart disease and able to attend 12‐week cardiac rehabilita‐ tion program were included. Training with treadmill walking and bicycling under supervision at cardiac rehabilitation unit once‐a‐week in the first 6 weeks followed by home‐based exercise program (bicycle and walking) with a target at 40%‐70% of maximum heart rate (HRmax) at pretraining peak exercise for… More >

Michelle Keir¹, Barbara Bailey¹, Angela Lee¹, Adrienne H. Kovacs^1,2, S. Lucy Roche^1,3

Congenital Heart Disease, Vol.13, No.5, pp. 740-747, 2018, DOI:10.1111/chd.12647

Abstract Background: With access to surgical care, >90% of today’s infants with congenital heart disease (CHD) will reach adulthood. During childhood, survivors accrue a wealth of health care experience and develop strategies for navigating life with a chronic disease.
Methods: Seeking to learn from this individualized process, we invited adults with complex CHD to participate in narrative analysis—an established qualitative research method for studying how individuals derive meaning from their personal stories. Audio recordings of 2‐4 hour free‐form interviews were transcribed and iteratively analyzed to identify common themes and detect similarities or differences in language, viewpoint and interpretation. Recruitment continued until… More >

Jill M. Steiner¹, James N. Kirkpatrick¹, Susan R. Heckbert², James Sibley³, James A. Fausto³, Ruth A. Engelberg³, J. Randall Curtis³

Congenital Heart Disease, Vol.13, No.5, pp. 721-727, 2018, DOI:10.1111/chd.12638

Abstract Objective: Overall health care resource utilization by adults with congenital heart disease has increased dramatically in the past two decades, yet little is known about utilization patterns at the end of life. The objective of this study is to better under‐ stand the patterns and influences on end‐of‐life care intensity for adults with con‐ genital heart disease.
Methods: We identified a sample of adults with congenital heart disease (n = 65), cancer (n = 10 784), or heart failure (n = 3809) who died between January 2010 and December 2015, cared for in one multi‐hospital health care system. We used… More >

Jonathan N. Menachem¹, Edo Y. Birati², Payman Zamani², Anjali T. Owens², Pavan Atluri³, Christian A. Bermudez³, David Drajpuch², Stephanie Fuller⁴, Yuli Y. Kim², Christopher E. Mascio⁴, Vikram Palanivel², J. Eduardo Rame², Joyce Wald², Michael A. Acker³, Jeremy A. Mazurek²

Congenital Heart Disease, Vol.13, No.4, pp. 492-498, 2018, DOI:10.1111/chd.12606

Abstract Background: Heart failure (HF) is the leading cause of death in adults with congenital heart disease (ACHD). Identification of disease progression and timing of referral for advanced therapies is often delayed. However, increased awareness and understanding of ACHD and improvements in the approach to treatment have led to improved outcomes. Pulmonary hypertension (PH) is a common barrier to HT. In ACHD, the approach to PH and HT is quite complicated, given the anatomic heterogeneity and lower prevalence and experience. However, in some cases, PH is a result of elevated systemic filling pressures and low output.
Methods: We describe the approach… More >

Albert C. Hergenroeder¹, Douglas S. Moodie², Daniel J. Penny², Constance M. Wiemann¹, Blanca Sanchez-Fournier¹, Lauren K. Moore², Jane Head³

Congenital Heart Disease, Vol.13, No.4, pp. 548-553, 2018, DOI:10.1111/chd.12604

Abstract Objective: To describe changes in functional status between the last pediatric and first adult congenital heart disease (CHD) clinic visits in patients with moderate to severe CHD after implementing a healthcare transition (HCT) planning program.
Design: Quasi-experimental design. Patients were followed prospectively following the implementation of the intervention; Control patients transitioned from the Pediatric CHD Clinic into Adult CHD Clinic before the intervention.
Setting: Texas Children’s Hospital (TCH).
Patients: Sixteen to 25-year-olds, cognitively normal, English speaking patients with moderate to severe CHD who transitioned from the Pediatric to the Adult CHD clinic.
Interventions: An EMR-based transition planning tool (TPT) was… More >

Fred H. Rodriguez III^1,2,3,4, Georges Ephrem^1,2, Jennifer F. Gerardin^1,2, Cheryl Raskind-Hood⁵, Carol Hogue⁵, Wendy Book^1,2

Congenital Heart Disease, Vol.13, No.1, pp. 59-64, 2018, DOI:10.1111/chd.12563

Abstract Objective: Although the ICD-9-CM code 745.5 is widely used to indicate the presence of a secundum atrial septal defect (ASD), it is also used for patent foramen ovale (PFO) which is a normal variant and for “rule-out” congenital heart disease (CHD). The ICD-10-CM code Q21.1 perpetuates this issue. The objective of this study was to assess whether code 745.5 in isolation or in combination with unspecified CHD codes 746.9 or 746.89 miscodes for CHD, and if true CHD positives decrease with age.
Design: Echocardiograms of patients with an ICD-9-CM code of 745.5 in isolation or in combination with unspecified CHD… More >

Sumeet S. Vaikunth^1,2, Roberta G. Williams³, Merujan Y. Uzunyan⁴, Han Tun⁵, Cheryl Barton³, Philip M. Chang⁵

Congenital Heart Disease, Vol.13, No.1, pp. 85-91, 2018, DOI:10.1111/chd.12549

Abstract Objective: Transition from pediatric to adult care is a critical time for patients with congenital heart disease. Lapses in care can lead to poor outcomes, including increased mortality. Formal transition clinics have been implemented to improve success of transferring care from pediatric to adult providers; however, data regarding outcomes remain limited. We sought to evaluate outcomes of transfer within a dedicated transition clinic for young adult patients with congenital heart disease.
Design, Setting, and Patients: We performed a retrospective analysis of all 73 patients seen in a dedicated young adult congenital heart disease transition clinic from January 2012 to December… More >

Michael A. Brock, John‐Anthony Coppola, Jana Reid, Diego Moguillansky

Congenital Heart Disease, Vol.14, No.6, pp. 924-930, 2019, DOI:10.1111/chd.12857

Abstract Objective: The primary aim of our work is to determine the incidence of atrial fibrillation following cardiac surgery in adults with congenital heart disease. Secondary aims include identifying risk factors predictive of developing early postoperative atrial fibrillation and morbidities associated with early postoperative atrial fibrillation.
Design: Retrospective analysis.
Setting: Single center, quaternary care children’s hospital.
Patients: This review included patients at least 18 years of age with known congenital heart disease who underwent cardiac surgery requiring a median sternotomy at our congenital heart center from January 1, 2012 to December 31, 2016.
Interventions: None.
Outcome Measures: The primary outcome was… More >