Machine Learning Informed Diagnosis for Congenital Heart Disease in Large Claims Data Source.

Background: With an increasing interest in using large claims databases in medical practice and research, it is a meaningful and essential step to efficiently identify patients with the disease of interest.

Objectives: This study aims to establish a machine learning (ML) approach to identify patients with congenital heart disease (CHD) in large claims databases.

Methods: We harnessed data from the Quebec claims and hospitalization databases from 1983 to 2000.

CanCHD Study of Hematopoietic Cancers in Children With and Without Genetic Syndromes.

Background: Individuals with genetic syndromes can manifest both congenital heart disease (CHD) and cancer attributable to possible common underlying pathways. To date, reliable risk estimates of hematopoietic cancer (HC) among children with CHD based on large population-based data remain scant. This study sought to quantify the risk of HC by the presence of genetic syndrome among children with CHD.

Risk prediction models for heart failure admissions in adults with congenital heart disease.

Background: Heart failure (HF) is the leading cause of death in adult patients with congenital heart disease (ACHD). No risk prediction model exists for HF hospitalization (HFH) for ACHD patients. We aimed to develop a clinically relevant one-year risk prediction system to identify ACHD patients at high risk for HFH.

Cancer Risk in Congenital Heart Disease-What Is the Evidence?

As life expectancy in patients with congenital heart disease (CHD) has improved, the risk for developing noncardiac morbidities is increasing in adult patients with CHD (ACHD). Among these noncardiac complications, malignancies significantly contribute to the disease burden of ACHD patients. Epidemiologic studies of cancer risk in CHD patients are challenging because they require large numbers of patients, extended follow-up, detailed and validated clinical data, and appropriate reference populations.

Transition and Transfer From Pediatric to Adult Congenital Heart Disease Care in Canada: Call For Strategic Implementation.

Dramatic increases in survival to adulthood for persons born with congenital heart disease (CHD) have led rise to a corresponding need to provide age-appropriate and developmentally appropriate care across the lifespan. Health care transition is a multidimensional process that ideally begins in early adolescence in the pediatric setting and continues through young adulthood with input from both pediatric and adult CHD providers. Preparation for transition includes the fostering of adolescents' knowledge of their CHD and of self-management and self-advocacy skills needed for lifelong management of chronic disease.

Flexible Modeling of the Association Between Cumulative Exposure to Low-Dose Ionizing Radiation From Cardiac Procedures and Risk of Cancer in Adults With Congenital Heart Disease.

Adults with congenital heart disease are increasingly being exposed to low-dose ionizing radiation (LDIR) from cardiac procedures. In a recent study, Cohen et al. (Circulation.

Rationale and Design of the FREQUENCY Study: The Fetal Cardiac Registry of Québec to Improve Resource Utilization in Fetal Cardiology.

Objective: Prenatal detection of congenital heart diseases (CHD) decreases morbidity and cost. To improve detections rates, most physicians refer pregnant women with high-risk pregnancies to fetal cardiologists even when there is no suspicion of CHD at the second trimester screening. This paper presents the rationale and detailed method of the Fetal Cardiac Registry of Québec to Improve Resource Utilization in Fetal Cardiology (FREQUENCY) study.

Improving Quality of Congenital Heart Disease Research in Canada: Standardizing Nomenclature Across Canada.

In an effort to improve the quality of interinstitutional and nation-wide research into congenital heart disease (CHD) in Canada, the authors propose the national implementation of a single nomenclature list for CHD as a first step towards achieving a common disease classification system in all Canadian institutions that deal with congenital heart malformations. The authors offer a brief overview of the history and state of nomenclature for CHD in Canada and recommend the national use of the CHD diagnostic list that was recently finalized by the International Society for Nomenclature of Paediatric and Congenital Heart Disease. This list was submitted to the World Health Organization for incorporation into the 11th iteration of the International Classification of Diseases and was recently translated into French by members of the International Society for Nomenclature of Paediatric and Congenital Heart Disease.

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

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 contextualized understanding of the evolution of adult CHD treatment in Canada.

Administrative health databases for addressing emerging issues in adults with CHD: a systematic review.

The need for population-based studies of adults with CHD has motivated the growing use of secondary analyses of administrative health data in a variety of jurisdictions worldwide. We aimed at systematically reviewing all studies using administrative health data sources for adult CHD research from 2006 to 2016. Using PubMed and Embase (1 January, 2006 to 1 January, 2016), we identified 2217 abstracts, from which 59 studies were included in this review.

Exposure to Low-Dose Ionizing Radiation From Cardiac Procedures and Malignancy Risk in Adults With Congenital Heart Disease.

Background: Adults with congenital heart disease (CHD) are exposed to increasing amounts of low-dose ionizing radiation (LDIR) from cardiac procedures. Cancer prevalence in this population is higher than in the general population. This study estimates the association between LDIR exposure from cardiac procedures and incident cancer in adult patients with CHD.

Cost of Congenital Heart Disease Hospitalizations in Canada: A Population-Based Study.

Background: The prevalence of congenital heart disease (CHD) is rising, and late complications are common. The impact of these factors on health-care costs is not well understood. We sought to describe inpatient CHD costs in Canada.

Prevalence of Cancer in Adults With Congenital Heart Disease Compared With the General Population.

The prevalence rate of cancer among adult patients with congenital heart disease (CHD) in North America has not been previously described. The Quebec adult CHD database was used to determine the prevalence rate of cancer among adult patients with CHD measured as the number of adults with CHD and cancer alive in 2005 per 1,000 adults with CHD. This prevalence rate was compared with the prevalence rate of cancer in the general population of adults in Canada.

Congenital Heart Defects in the United States: Estimating the Magnitude of the Affected Population in 2010.

Background: Because of advancements in care, there has been a decline in mortality from congenital heart defects (CHDs) over the past several decades. However, there are no current empirical data documenting the number of people living with CHDs in the United States. Our aim was to estimate the CHD prevalence across all age groups in the United States in the year 2010.

Cardiac output as a predictor in congenital heart disease: Are we stating the obvious?

Background: Significant pulmonary regurgitation, declining right-sided ejection fraction, increased right ventricular (RV) volumes as well as left ventricular (LV) dysfunction have all been identified as predictors of poor outcomes in patients with congenital heart disease (CHD). The prognostic value of the cardiac output (CO) in these patients however has never been studied.

Methods: All consecutive ambulatory adult patients with CHD referred for magnetic resonance imaging (MRI) at the Montreal Children's Hospital between June 2007 and May 2009 were included.

Infective Endocarditis Hospitalizations Before and After the 2007 American Heart Association Prophylaxis Guidelines.

Background: In 2007, the American Heart Association (AHA) published revised guidelines for infective endocarditis (IE) prophylaxis. Population-based data with respect to the potential impact of these revised guidelines are lacking.

Methods: The Canadian Institute for Health Information Discharge Abstract Database was used to identify all hospitalizations between April 2002 and March 2013 having IE as a primary diagnosis.

Stroke in Adults With Congenital Heart Disease: Incidence, Cumulative Risk, and Predictors.

Background: Stroke is an important cause of morbidity and mortality, although there is a lack of comprehensive data on its incidence, cumulative risk, and predictors in patients with adult congenital heart disease.

Methods And Results: This retrospective study of 29 638 Quebec patients with adult congenital heart disease aged 18 to 64 years between 1998 and 2010 was based on province-wide administrative data. The cumulative risk of ischemic stroke estimated up to age 64 years was 6.

Exposure to Low-Dose Ionizing Radiation From Cardiac Procedures in Patients With Congenital Heart Disease: 15-Year Data From a Population-Based Longitudinal Cohort.

Background: The burden of low-dose ionizing radiation (LDIR) exposure from medical procedures among individuals with congenital heart disease (CHD) is unknown. In this longitudinal population-based study, we sought to determine exposure to LDIR-related cardiac imaging and therapeutic procedures in children and adults with CHD.

Methods And Results: In an analysis of the Quebec CHD database, exposure to the following LDIR-related cardiac procedures was recorded: catheter-based diagnostic procedures, structural heart interventions, coronary interventions, computed tomography scans of the chest, nuclear procedures, and pacemaker/implantable cardioverter-defibrillator insertion and repair.

Adult Congenital Heart Disease: Scope of the Problem.

This article reviews the changing epidemiology of congenital heart disease summarizing its impact on the demographics of the congenital heart disease population and the progress made in order to improve outcomes in this patient population. Birth prevalence of congenital heart disease can be modified by many factors. As a result of decreasing mortality and increasing survival in all forms of congenital heart disease, the median age of patients has increased and adults now compose two-thirds of patients with congenital heart disease.

Congenital Heart Disease Hospitalizations in Canada: A 10-Year Experience.

Background: The effect of the growing population of children and adults with congenital heart disease (CHD) on inpatient services in Canada is not known. We sought to assess temporal changes in hospitalizations of CHD patients.

Methods: We identified all patients with a CHD diagnosis who received inpatient care in Canada between fiscal years 2003 and 2012 according to the Discharge Abstract Database of the Canadian Institute for Health Information.