Materiały źródłowe

• #1 Surveillance of adults with congenital heart disease: Current guidelines and actual clinical practice – PubMed

  https://pubmed.ncbi.nlm.nih.gov/38636602/

  Congenital heart disease (CHD) is the most common birth defect with prevalence of 0.8%. […] Thanks to tremendous progress in medical and surgical practice, nowadays, 90% of children survive into adulthood. […] Recently European Society of Cardiology (ESC), American College of Cardiology (ACC)/ American Heart Association (AHA) issued guidelines which offer diagnostic and therapeutic recommendations for the different defect categories. […] Differences exist between reported current clinical practice and published guidelines. […] This is particularly true for the care of patients with mild lesions. […] In addition, some differences exist between ESC and American guidelines, with more frequent surveillance suggested by the Americans.

• #1 Congenital Heart Disease in Adults | Doctor

  https://patient.info/doctor/congenital-heart-disease-in-adults

  With improvements in care and a decrease in child mortality associated with congenital heart disease, there are an increasing number of adults with congenital heart disease. […] The prevalence of congenital heart disease worldwide is about 9 per 1000 births, with substantial geographic variation. […] Due to medical, surgical, and technological improvements over the past decades, over 90% of individuals who are born with congenital heart disease now survive into adulthood. As a result, the prevalence of adult congenital heart disease has increased and now by far exceeds the number of children with congenital heart disease.

• #1 Epidemiology of adult congenital heart disease: demographic variations worldwide

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3515732/

  The population of adults with a congenital heart defect (CHD) is increasing, due to improved survival after cardiac surgery. […] The exact size of the current population of adults with CHD is unknown, but the best available evidence suggests that currently overall prevalence of CHD in the adult population is about 3000 per million. […] Knowledge of demographic variations of CHD may lead to new aetiological insights and may be useful for preventive therapies. […] Regional differences in CHD prevalence may be due both to variations in incidence and in mortality. […] The higher risk of several major cardiac outcomes in males with CHD might well explain at least partly the increased mortality rate in men. […] To gain more insight into demographic differences around the world large international multicentre studies on the epidemiology of CHD are needed.

• #1 Congenital Heart Disease in Adults | 5-Minute Clinical Consult

  https://im.unboundmedicine.com/medicine/view/5-Minute-Clinical-Consult/816626/all/Congenital_Heart_Disease_in_Adults?q=A+Hepatitis

  Congenital defects involve the walls of the heart, its valves, arteries, and/or veins potentially or actually resulting in hemodynamic effects. […] The number of patients surviving into adulthood has increased with early detection, improved imaging modalities, new medications, surgical intervention methods, and management of comorbid conditions. […] 1% of births each year in the United States (1) […] AHA: 1.3 million people alive in 2015 have a congenital heart defect (3). […] Mild: 45%, moderate: 37%, severe: 14% (2)

• #1 Surveillance of Congenital Heart Defects Among Children, Adolescents, and Adults | Research Funding

  https://researchfunding.duke.edu/surveillance-congenital-heart-defects-among-children-adolescents-and-adults

  Congenital heart defects (CHD) affect about 1% of all births in the United States, and are a leading cause of birth defect-associated infant mortality, morbidity, and healthcare costs. […] An estimated two million persons in the U.S. are living with a CHD, including over one million adults; about 12% of these affected adults have a severe CHD. […] However, little data exist on the descriptive epidemiology of CHD beyond early childhood in the U.S. […] Despite the public health burden, the lack of population-based surveillance precludes reliable data on people with CHD, their survival, healthcare utilization, and characteristics associated with long-term outcomes. […] Through this surveillance activity, these data will be assessed, enabling and informing efforts to improve the health and well-being of people with CHD.

• #1 Congenital heart disease epidemiology and demographics – wikidoc

  https://www.wikidoc.org/index.php/Congenital_heart_disease_epidemiology_and_demographics

  Congenital heart disease is the most common birth defect, affecting one in every 125 live births. More children die each year from congenital heart disease than from all forms of pediatric cancers combined. […] Affects approximately one in every 125 babies born. […] In the US, 40,000 people each year are born with congenital heart disease. […] In the US, 4,000 out of the 40,000 do not survive past infancy and into the second year of life. […] In the US, twice as many children die each year from congenital heart disease than from all forms of pediatric cancers combined. […] Approximately 1 million adults in united states are estimated to have Congenital heart defect. […] Growth of population with congenital heart defect is 5%. […] The number of adults with problems connected to a congenital heart defect is rising, passing the number of children with congenital heart defects in most Western countries. This group is referred to as grown-up congenital heart disease (GUCH) patients.

• #1 About Congenital Heart Defects and Our Program

  https://sph.emory.edu/research/centers/congenital-heart-defect/index.html

  Population-based surveillance of CHDs. […] Many U.S. children, teens, and adults live with and receive care for CHD. […] 20-33% of adolescents and adults with CHD have been diagnosed with a mental health condition. […] Many women with CHD become pregnant and experience pregnancy-related health complications. […] Severe CHD ranged from 11% (NY) to 20% (GA). […] Medicaid Coverage: 75% (MA), 31% (GA), 28% (NY). […] Capture of comorbid conditions varied across sites. […] Older patients and those with non-complex CHD contribute to health burden. […] Cardiac complications and comorbid conditions are common. […] The number of people born with CHD living into adulthood is increasing, yet the receipt of treatment for perinatal mood disorders (PMD), the number one complication in pregnancy and childbirth, have not been explored in pregnant women living with CHD.

• #1 Epidemiology of adult congenital heart disease: demographic variations worldwide

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3515732/

  Geographical variations in CHD prevalence can be explained by variations in socioeconomic status, education, urbanisation, climatological factors, ethnicity and patient-related factors, such as comorbidity, lifestyle and healthcare-seeking behaviour. […] Therefore, using data from multiple sources, with adjustment for the imperfect nature of each, is an important strategy in CHD studies. Ideally, evidence-based knowledge on epidemiology of CHD should be obtained from large international multicentre studies.

• #1

  https://link.springer.com/article/10.1007/s12471-012-0335-1

  The higher risk of several major cardiac outcomes in males with CHD might well explain at least partly the increased mortality rate in men. […] Regional differences in quality of life among CHD patients have been reported and although methodological differences may play a role, sociocultural differences warrant further attention. […] To gain more insight into demographic differences around the world large international multicentre studies on the epidemiology of CHD are needed.

• #1 Changing epidemiology of congenital heart disease: effect on outcomes and quality of care in adults | Nature Reviews Cardiology

  https://www.nature.com/articles/s41569-022-00749-y

  The epidemiology of congenital heart disease (CHD) has changed in the past 50 years as a result of an increase in the prevalence and survival rate of CHD. […] Mortality in patients with CHD has changed dramatically since the latter half of the twentieth century as a result of more timely diagnosis and the development of interventions for CHD that have prolonged life. […] As patients with CHD age, the disease burden shifts away from the heart and towards acquired cardiovascular and systemic complications. […] The societal costs of CHD are high, not just in terms of health-care utilization but also with regards to quality of life. […] Lifespan disease trajectories for populations with a high disease burden that is measured over prolonged time periods are becoming increasingly important to define long-term outcomes that can be improved.

• #1 Data and Statistics | Congenital Heart Defects (CHDs) | CDC

  https://www.cdc.gov/heart-defects/data/index.html

  Heart defects are common. Every 15 minutes a baby is born with a heart defect in the U.S. Heart defects are common. Heart defects affect nearly 1% of about 40,000 births per year in the United States. The prevalence of some heart defects, especially mild types, is increasing. The prevalence of other types has remained stable. The most common type of heart defect is a ventricular septal defect. About 1 in 4 babies with a heart defect have a critical heart defect. Infants with critical heart defects generally need surgery or other procedures in their first year of life. The prevalence of all types of heart defects, including critical heart defects, varies by state and by type of defect. Several methods have been used to estimate the total number of children and adults with heart defects in the United States. In 2010, about 1 million children and 1.4 million adults were living with a heart defect. In 2010, 1 in 250 to 1 in 59 children and teens were living with a heart defect. In addition, between 2011 and 2013, 1 in 157 children ages 1-10 years and 1 in 680 adolescents and adults ages 11-64 years had a heart defect noted in their health record at a medical visit. Heart defects are a leading cause of birth defect-associated infant illness and death. During 1999-2017, about 1 in every 814 deaths were attributable to heart defects in the United States. Nearly half (48%) of the deaths due to heart defects occurred during infancy (younger than 1 year of age). Survival of infants with heart defects depends on severity of the defect, timing of diagnosis, treatments, and presence of other conditions. About 97% for babies born with a non-critical heart defect. About 75% for babies born with a critical heart defect. Survival and medical care for babies with critical heart defects are improving. One-year survival for infants with critical heart defects improved from about 67% during 1979-1993 to about 83% during 1994-2005. Overall, about 81% of babies born with heart defects are expected to survive to at least 35 years of age. After the first year of life, about 93% of one-year-olds with a heart defect are expected to survive to at least 35 years of age. Adults living with heart defects are more likely than the general population to report additional cardiovascular issues. Adults with heart defects are more likely to have a disability than adults without heart defects. About 4 in every 10 adults with a CHD have a disability. In 2019, hospital costs for individuals living with heart defects in the United States exceeded $9.8 billion.

• #1 Congenital Heart Disease in Adults: Types, Symptoms, and TreatmentHealthline

  https://www.healthline.com/health/congenital-heart-disease-in-adults

  If you have a known congenital heart defect, you should contact your doctor as soon as possible if you have new symptoms or worsening existing symptoms. […] Experts don’t know why most heart defects happen. […] Some types of congenital heart disease have a hereditary component, which means you might have inherited genetic irregularities from one of your parents. […] The outlook for any individual with congenital heart disease depends on the type and severity of the condition and when and how they received treatment for it. […] According to the Centers for Disease Control and Prevention (CDC), 93% of infants who survive their first year with congenital heart disease go on to live until at least the age of 35 years. A 2023 study suggests that 75% of people who reach the age of 18 years with congenital heart disease will live into their 60s.

• #1 Improving medical care and prevention in adults with congenital heart disease—reflections on a global problem—part I: development of congenital cardiology, epidemiology, clinical aspects, heart failure, cardiac arrhythmia – Neidenbach – Cardiovascular Dia

  https://cdt.amegroups.org/article/view/22846/html

  Today most patients with congenital heart defects (CHD) survive into adulthood. […] Unfortunately, despite relevant residua and sequels, follow-up care of adults with congenital heart disease (ACHD) is not performed in specialized and/or certified physicians or centres. […] Major problems in the long-term course encompass heart failure, cardiac arrhythmias, heart valve disorders, pulmonary vascular disease, infective endocarditis, aortopathy and non-cardiac comorbidities. […] Although mortality of CHD has decreased considerably, morbidity remains substantial which is widely underestimated. […] Thus, despite adequate repair almost all patients with CHD are chronically ill, and many have residua and sequels of the respective cardiac defect requiring specific follow-up and care. […] Of note, medical care in specialized centers is able to significantly reduce mortality in children and adults with CHD.

• #1 Epidemiology and Mortality in Adult Congenital Heart Disease – Page 6

  https://www.medscape.com/viewarticle/760770_6

  Many adults with complex congenital heart disease remain at risk for cardiovascular complications and premature death. […] Patients with an increased risk for premature death in adulthood include those with: unoperated or surgically palliated cyanotic heart disease or Eisenmenger physiology; patients with repaired tetralogy of Fallot; patients with Fontan palliation for single ventricle physiology; and patients with subaortic right ventricles. […] In developed countries, the number of patients with unoperated cyanotic heart disease or Eisenmenger physiology will decrease. […] While most patients with subaortic right ventricles survive to adulthood and have good quality of life, they remain at risk for premature death.

• #1 Epidemiology and Mortality in Adult Congenital Heart Disease – Page 6

  https://www.medscape.com/viewarticle/760770_6

  In adults, cyanotic heart disease is found in patients with unoperated or palliated cyanotic congenital heart conditions (i.e., forms of pulmonary atresia or single ventricle physiology). The largest group of cyanotic patients in adulthood are, however, patients with Eisenmenger reaction, due to congenital heart lesions with a large left-to-right shunt and subsequent development of irreversible pulmonary hypertension with shunt reversal. Patients with cyanotic heart lesions are at a significant risk for morbidity and premature mortality. Common causes of death are sudden death, heart failure and pulmonary hemorrhage. […] In developed countries, both the number of patients with Eisenmenger physiology and the number of patients with unoperated/palliated cyanotic heart lesions will decrease in the future.

• #1 Improving medical care and prevention in adults with congenital heart disease—reflections on a global problem—part I: development of congenital cardiology, epidemiology, clinical aspects, heart failure, cardiac arrhythmia – Neidenbach – Cardiovascular Dia

  https://cdt.amegroups.org/article/view/22846/22176

  Of note, medical care in specialized centers is able to significantly reduce mortality in children and adults with CHD. […] As many CHD-related problems manifest differently from acquired heart disease, established treatment regimens for acquired heart disease can only be applied to a limited extent to CHD. […] The onset of heart failure is critical with respect to morbidity and mortality of adults with CHD, where heart failure is the cause of death in up to 25% of patients. […] Current incidence and prevalence data of heart failure in CHD are not reliable, because they derive from different definitions of heart failure. […] Recognition of heart failure in CHD can be tricky and should be known to the treating physician. […] In conclusion, although today most patients with CHD survive into adulthood, many of them have relevant residua and sequels, and deeply need an experienced follow-up care in specialized and/or certified physicians or centres. […] In the field of CHD primary and secondary medical prevention will henceforth become increasingly important in order to reduce the burden of disease as well as the socioeconomic burden and costs.

• #1

  https://scholars.duke.edu/individual/pub1637162

  BACKGROUND: Despite advances in treatment and survival, individuals with congenital heart defects (CHD) have a higher risk of heart failure (HF) compared to the general population. […] HF was documented for 2.2% of adolescents and 12.9% of adults with CHD. […] Within this population-based cohort, over 1 in 50 adolescents and 1 in 8 adults with CHD had HF, which was associated with increased mortality. […] Survivors of CHD frequently develop heart failure across the lifespan. […] Over 1 in 50 adolescent and 1 in 8 adult survivors of CHD have heart failure which is associated with increased mortality compared to CHD survivors without heart failure. […] Heart failure development is associated with potentially modifiable cardiovascular risk factors such as hypertension, coronary artery disease, and diabetes. […] Controlling modifiable cardiovascular risk factors may serve to lower the risk of heart failure and mortality in survivors of congenital heart disease of all ages.

• #1

  https://smw.ch/index.php/smw/article/view/2365

  Nowadays, more than 90% of all children born with congenital heart disease (CHD) reach adult life. […] Although initially considered to be cured, the majority of them continue to need specialised follow-up because they require re-do interventions or are at increased risk of cardiovascular complications and premature death. […] Arrhythmias are the most common cause of unscheduled hospital visits for grown-up CHD (GUCH) patients, accounting for one third of emergency admissions in these patients. […] Some GUCH patients are also at increased risk for sudden cardiac death. […] Decompensated heart failure is the other leading cause of death. […] Adults with moderate or complex CHD and regular follow-up in specialised GUCH centres have a survival benefit compared with patients without such follow-up.

• #1 Pulmonary hypertension with congenital heart disease: Clinical manifestations and diagnosis – UpToDate

  https://www.uptodate.com/contents/pulmonary-hypertension-with-congenital-heart-disease-clinical-manifestations-and-diagnosis

  Approximately 3 to 10 percent of patients with congenital heart disease (CHD) develop pulmonary hypertension (termed pulmonary hypertension-congenital heart disease [PH-CHD]) […] PH-CHD is thus an overarching term of PH in patients with CHD. In these patients, PH is commonly, but not always, caused by CHD. The most common type of PH-CHD is congenital shunt-related pulmonary arterial hypertension (PAH). Given the epidemic of heart failure (from systemic ventricular dysfunction) in patients with CHD, the prevalence of type 2 PH is likely rising among patients with CHD […] However, with rapidly increasing numbers of CHD patients with heart failure from systemic ventricular dysfunction, pulmonary venous PH (group 2) and mixed forms are increasing.

• #1 CHD STAR – Iowa Registry for Congenital and Inherited Disorders

  https://ircid.public-health.uiowa.edu/home/surveillance/congenital-heart-defect-surveillance/

  Congenital Heart Defects Surveillance Across Time And Regions (CHD STAR) is a CDC-funded surveillance program that is currently active in 7 states (Arizona, Georgia, Iowa, New York, North Carolina, South Carolina, and Utah). The goals of CHD STAR are to examine survival, healthcare utilization, co-occurring conditions, and other outcomes over time. Improved understanding of the public health significance of CHDs can lead to improved strategies to decrease mortality and improve the health of people affected by CHDs. […] On behalf of CHD STAR, IRCID conducts population-based surveillance of children, adolescents, and adults with congenital heart defects. Most current efforts to conduct population-based surveillance have focused on newborns, and limited population information is available on CHDs past early childhood. CHD STAR strives to better understand experiences and health outcomes related to health equity and identify opportunities to improve the health of people with CHDs.

• #1 Tracking and Research | Congenital Heart Defects (CHDs) | CDC

  https://www.cdc.gov/heart-defects/research/index.html

  CDC supports several specific birth defects tracking efforts to collect information on birth defects, including heart defects. Data collected through these programs inform prevention and referral to care activities. […] Since 2012, CDC and partners have been building the infrastructure and methods to collect information on children, teens, and adults living with heart defects. These efforts help us better understand survival, healthcare use, reproductive health, and longer-term outcomes of people living with these conditions. […] In 2024, CDC funded six sites for a second phase of the Congenital Heart Defects Surveillance across Time And Regions project (CHD STAR2). Sites include the Duke University, Emory University, Indiana University, New York State Department of Health, the University of Texas Health Science Center at Houston, and the University of Utah. CDC will fund these sites until 2029 to continue examining outcomes among children, teens, and adults with heart defects. […] CDC funds two large studies, the National Birth Defects Prevention Study (NBDPS) and the Birth Defects Study to Evaluate Pregnancy exposureS (BD-STEPS). These studies identify factors that increase or decrease the risk for having a baby with a birth defect, including heart defects.

• #1 CDC Role in the CHD Community – Conquering CHDsearchhamburger-close

  https://www.conqueringchd.org/cdc-role-in-the-chd-community/

  Expansion and In-Depth Analysis (2015–2019): The CDC launched a 4-year expansion project with five sites: University of Colorado in Denver, Duke University, Emory University, the New York State Department of Health, and the University of Utah in Salt Lake City. These programs are looking at information to estimate the number of people living with heart defects and better understand the survival, healthcare use, and longer-term outcomes of people living with heart defects. […] CHD STAR Project (2019–2024): The CDC funded six sites in 2019 and one additional site in 2020 for the Congenital Heart Defects Surveillance across Time And Regions (CHD STAR) project: University of Arizona, Duke University, Emory University, New York State Department of Health, South Carolina Department of Health and Environmental Control, and University of Utah in 2019 and University of Iowa in 2020. CDC will fund these sites until 2024 to look at children, adolescents, and adults with heart defects over a 10-year time period.

• #1 Surveillance of Congenital Heart Defects Among Children, Adolescents, and Adults – Federal Grant

  https://www.federalgrants.com/Surveillance-of-Congenital-Heart-Defects-Among-Children-Adolescents-and-Adults-75163.html

  COMPONENT A: Surveillance of CHDs among individuals aged 1-45 years through linkage of existing data sources 1) Develop and implement innovative approaches for conducting surveillance of CHDs among individuals aged 1-45 years; 2) Assess age-specific mortality, healthcare utilization, comorbidities, and other outcomes over time among these individuals. […] COMPONENT B: Validate codes and develop processes for identifying individuals of all ages with CHDs using healthcare claims data 1) Determine sensitivity and positive predictive value of healthcare claims data for identifying individuals of all ages with CHDs; 2) Determine how validity of healthcare claims data differs by age, CHD severity, CHD type, and other individual or healthcare characteristics; 3) Using healthcare claims data, develop and test different processes to estimate prevalence and examine comorbidities and other outcomes among individuals with CHDs; 4) Inform activities on surveillance of CHDs across the lifespan that rely on understanding the validity of administrative data sources.

• #1 Surveillance of Congenital Heart Defects Among Children, Adolescents, and Adults | Research Funding

  https://researchfunding.duke.edu/surveillance-congenital-heart-defects-among-children-adolescents-and-adults

  Component A objectives include: (1) assess survival, comorbidities, healthcare utilization during the period 2021-2023, and characteristics associated with long-term outcomes among people with CHD; (2) assess health equity among people with CHD; (3) examine state and national healthcare policies that have an impact on people with CHD; (4) examine COVID-19 and related data such as health care utilization during the pandemic among people with CHD; and (5) work with local/state partners to use site-specific CHD data.

• #1 Surveillance of Congenital Heart Defects Among Children, Adolescents, and Adults – Federal Grant

  https://www.federalgrants.com/Surveillance-of-Congenital-Heart-Defects-Among-Children-Adolescents-and-Adults-75163.html

  The purpose of this program is to support the development of population-based surveillance systems and data linkages for persons with congenital heart defects (CHDs) using non-research CDC cooperative agreements. An estimated 2 million persons in the United States are living with a CHD, yet little is known about their long-term outcomes. High-quality data will improve the public’s understanding of the epidemiology and public health significance of CHDs. Surveillance data will allow monitoring of special sub-populations with CHDs and potentially identify risk factors and prognostic factors for identifying opportunities and developing effective secondary prevention strategies directed at reducing the personal and public health impact of CHDs and improving the lives of individuals with a CHD.

• #1 Surveillance of adults with congenital heart disease: Current guidelines and actual clinical practice

  https://lirias.kuleuven.be/4154147

  Surveillance of adults with congenital heart disease: Current guidelines and actual clinical practice […] Congenital heart disease (CHD) is the most common birth defect with prevalence of 0.8%. […] Thanks to tremendous progress in medical and surgical practice, nowadays, >90% of children survive into adulthood. […] Recently European Society of Cardiology (ESC), American College of Cardiology (ACC)/ American Heart Association (AHA) issued guidelines which offer diagnostic and therapeutic recommendations for the different defect categories. […] However, the type of technical exams and their frequency of follow-up may vary largely between clinicians and centres. […] We aimed to present an overview of available diagnostic modalities and describe current surveillance practices by cardiologists taking care of adults with CHD (ACHD).

• #1 Adults With Congenital Heart Disease

  http://www.cardiosmart.org/topics/congenital-heart-disease/adults-with-congenital-heart-disease

  Congenital heart disease (also called congenital heart defects) occurs when there is a problem with the heart that is present at birth. Worldwide, 1 in 100 babies are born with some type of congenital heart disease. […] In fact, in the US, adults represent the majority of patients with congenital heart disease. […] Over 1 million adults now live with congenital heart disease. […] For the first time, more adults are living with congenital heart disease than children. […] Childhood deaths linked to congenital heart disease dropped by nearly 60% from 1987 to 2005. […] People with most types of congenital heart defects need continued and careful monitoring as adults. […] Yet only about 10% of adults get the recommended care they need, according to the Adult Congenital Heart Association. […] Congenital heart disease is also linked to anxiety, depression, post-traumatic stress disorder and psychosocial stress. […] Adult congenital heart disease is a relatively new subspecialty in medicine.

• #1 Congenital Heart Disease Clinic | Nova Scotia Health

  https://www.nshealth.ca/clinics-programs-and-services/congenital-heart-disease-clinic

  The Adult Congenital heart disease clinic is dedicated to helping those individuals born with a defect in the heart structure. Adults with congenital heart disease require lifelong surveillance even if they have had a repair or surgery. […] The clinic visit involves an assessment, testing, planning and education with the goal to achieve healthy outcomes.

• #1 Improving medical care and prevention in adults with congenital heart disease—reflections on a global problem—part I: development of congenital cardiology, epidemiology, clinical aspects, heart failure, cardiac arrhythmia – Neidenbach – Cardiovascular Dia

  https://cdt.amegroups.org/article/view/22846/html

  As many CHD-related problems manifest differently from acquired heart disease, established treatment regimens for acquired heart disease can only be applied to a limited extent to CHD. […] In summary, assessment and treatment of heart failure in CHD is challenging and requires special expertise as recommendations for acquired heart disease cannot be applied uncritically. […] Therefore, CHD patients are best served in a dedicated ACHD heart failure clinic. […] In conclusion, although today most patients with CHD survive into adulthood, many of them have relevant residua and sequels, and deeply need an experienced follow-up care in specialized and/or certified physicians or centres. […] In the field of CHD primary and secondary medical prevention will henceforth become increasingly important in order to reduce the burden of disease as well as the socioeconomic burden and costs.

• #1 Senate Introduces the Congenital Heart Futures Reauthorization Act of 2024 to Reauthorize CHD Surveillance Research Funding and Address ACHD Workforce Shortages – ACHA

  https://www.achaheart.org/about-us/news/2024/senate-introduces-the-congenital-heart-futures-reauthorization-act-of-2024-to-reauthorize-chd-surveillance-research-funding-and-address-achd-workforce-shortages/

  Despite nearly 2 million adults living with CHDs in the United States, there are only 509 ACHD board-certified physicians providing care to these patients. […] However, only 10 percent of adults with CHD receive the recommended specialized, lifelong care that they require. […] The advancement of this legislation will help ensure increased awareness, research opportunities and data collection for adults living with congenital heart disease.

• #1 Myths and Facts: Adult Congenital Heart Disease | Cedars-Sinai

  https://www.cedars-sinai.org/blog/myths-facts-adult-congenital-heart-disease.html

  At Cedars-Sinai, comprehensive care teams encourage all congenital heart patients to stay in specialized care, especially during the transition from childhood to adulthood, so they stay informed about their condition and remain healthy for life. […] „Yes, you can lead a long and productive life it’s just going to be something that requires ongoing surveillance.” […] Fact: Adults with congenital heart disease now outnumber children with congenital heart disease. […] Thanks to recent advances in surgeries and treatments, more than 90% of kids with congenital heart disease are anticipated to live to adulthood. […] The American College of Cardiology and the American Heart Association guidelines recommend that all adults with a history of congenital heart disease, no matter how simple, should see a specialized cardiologist at least once.

• #1 Congenital Heart Defects

  https://www.health.ny.gov/diseases/birth_defects/chd.htm

  Congenital Heart Defects (CHDs) are the most common birth defects, occurring in about 1 in 110 births. […] Due to medical advances, there are now more people with a CHD reaching adulthood than ever before. […] Of the 2.4 million people in the U.S. living with a CHD, more than half are adults, and that number is expected to rise 5% every year. However, adults with CHDs have 3 4 times higher rates of Emergency Room visits, hospitalizations, and Intensive Care Unit stays than the general population. […] Many people with CHDs are not cured with one surgery and require specialized health care throughout their lives. People with CHDs face a life-long risk of health problems such as: […] Find Adult CHD Clinics.

• #1 About Congenital Heart Defects and Our Program

  https://sph.emory.edu/research/centers/congenital-heart-defect/index.html

  This study uses Medicaid claims data to evaluate 5,235 women with CHD who had a delivery spanning the years 1999-2013. […] Hospital readmission is an important driver of costs among patients with congenital heart disease (CHD). […] Risk factors for readmission include a history of cardiac surgery, longer length of stay, and comorbid conditions. […] This study also demonstrates the feasibility of linking a national subspecialty registry to a clinical and administrative data repository to follow longitudinal outcomes of interest. […] The current study determined whether prevalence of pregnancy-related complications differed by history of Medicaid enrollment among pregnant women with CHD. […] The aim of this study was to estimate the percentage of Georgia Medicaid beneficiaries diagnosed with a CHD sometime during 1999-2007 who also had a Medicaid-paid claim during 2008-2010.

• #1 Changing epidemiology of congenital heart disease: effect on outcomes and quality of care in adults | Nature Reviews Cardiology

  https://www.nature.com/articles/s41569-022-00749-y

  Quality improvement initiatives, including advanced physician training for adult CHD in the past 10 years, have begun to improve disease outcomes. […] As we seek to transform lifespan into healthspan, research efforts need to incorporate big data to allow high-value, patient-centred and artificial intelligence-enabled delivery of care. […] Such efforts will facilitate improved access to health care in remote areas and inform the horizontal integration of services needed to manage CHD for the prolonged duration of survival among adult patients. […] Measurable changes in the prevalence of congenital heart disease (CHD) in the past decades are the result of evolving trends in birth prevalence and survival of patients over time. […] Despite regional variations, the survival rates of patients with CHD have improved globally as evidenced by an increasing median age of CHD populations.

• #1 Senate Introduces the Congenital Heart Futures Reauthorization Act of 2024 to Reauthorize CHD Surveillance Research Funding and Address ACHD Workforce Shortages – ACHA

  https://www.achaheart.org/about-us/news/2024/senate-introduces-the-congenital-heart-futures-reauthorization-act-of-2024-to-reauthorize-chd-surveillance-research-funding-and-address-achd-workforce-shortages/

  The Congenital Heart Futures Reauthorization Act of 2024 reaffirms our country’s commitment to vital research, surveillance, and awareness programs at the Centers for Disease Control and Prevention (CDC) by reauthorizing funding at $10 million annually through FY 2029. […] The legislation also requires the Secretary of Health and Human Services (HHS) to convene a workshop of subject matter experts on adults living with congenital heart disease (CHD) to identify research gaps and opportunities for the lifelong needs of patients, assess the workforce capacity of healthcare providers to treat adult patients and recommend options to address any workforce shortages, and foster collaboration across federal agencies, healthcare providers, researchers, and patient organizations. […] Within three years after becoming law, the HHS Secretary will be required to issue a report to Congress with findings and recommendations to advance research relating to the lifelong needs of CHD patients and address the workforce shortages impacting the adult congenital heart disease (ACHD) population.

• #1 42 U.S. Code § 280g-13 – National congenital heart disease research, surveillance, and awareness | U.S. Code | US Law | LII / Legal Information Institute

  https://www.law.cornell.edu/uscode/text/42/280g-13

  The Secretary shall, as appropriate (1) enhance and expand research and data collection efforts related to congenital heart disease, including to study and track the epidemiology of congenital heart disease to understand health outcomes for individuals with congenital heart disease across all ages; […] The Secretary shall carry out activities, including, as appropriate, through a national cohort study and a nationally-representative, population-based surveillance system, to improve the understanding of the epidemiology of congenital heart disease in all age groups, with particular attention to (A) the incidence and prevalence of congenital heart disease in the United States; […] The Secretary may carry out awareness and educational activities related to congenital heart disease in individuals of all ages, which may include information for patients, family members, and health care providers, on topics such as the prevalence of such disease, the effect of such disease on individuals of all ages, and the importance of long-term, specialized care for individuals with such disease.

• #1 42 U.S. Code § 280g-13 – National congenital heart disease research, surveillance, and awareness | U.S. Code | US Law | LII / Legal Information Institute

  https://www.law.cornell.edu/uscode/text/42/280g-13

  The Secretary shall issue a report to the Committee on Energy and Commerce of the House of Representatives and the Committee on Health, Education, Labor, and Pensions of the Senate including the following: (A) A description of past and present activities of the Department of Health and Human Services to increase awareness and knowledge of the public with respect to congenital heart disease, including efforts to address the lifelong needs of congenital heart disease patients. […] The Secretary shall develop and submit to Congress a strategy for improving efforts to increase awareness and knowledge of the public and education and training of health care providers with respect to congenital heart disease.

• #2 About Congenital Heart Defects and Our Program

  https://sph.emory.edu/research/centers/congenital-heart-defect/index.html

  Congenital heart defects (CHDs) occur in approximately 1%, or 40,000 births per year in the United States. […] Survival in infants with CHD through adulthood has significantly increased over the past few decades due to screening programs that allow for early detection during and after pregnancy, as well as innovative surgical procedures that correct or modify structural defects. […] In addition, collaborative public health surveillance amongst clinicians, public health professionals, and other researchers has facilitated an environment where CHD survival can be evaluated alongside comorbidities, healthcare utilization, and socioeconomic factors in order to influence decision making in healthcare policy and clinical settings. […] The Emory Adolescent and Adult Congenital Heart Defect (CHD) Program has been working collaboratively with the Centers for Disease Control and Prevention (CDC) and other institutions across the nation since 2012 to better understand the strengths and limitations of CHD surveillance in the U.S., describe characteristics and understand healthcare utilization of the adolescent and adult CHD population, and to inform actions to improve health outcomes and address inequities.

• #2 Myths and Facts: Adult Congenital Heart Disease | Cedars-Sinai

  https://www.cedars-sinai.org/blog/myths-facts-adult-congenital-heart-disease.html

  At Cedars-Sinai, comprehensive care teams encourage all congenital heart patients to stay in specialized care, especially during the transition from childhood to adulthood, so they stay informed about their condition and remain healthy for life. […] „Yes, you can lead a long and productive life it’s just going to be something that requires ongoing surveillance.” […] Fact: Adults with congenital heart disease now outnumber children with congenital heart disease. […] Thanks to recent advances in surgeries and treatments, more than 90% of kids with congenital heart disease are anticipated to live to adulthood. […] The American College of Cardiology and the American Heart Association guidelines recommend that all adults with a history of congenital heart disease, no matter how simple, should see a specialized cardiologist at least once.

• #2 Long-Term Follow-Up of Adults with Congenital Heart Disease | SpringerLink

  https://link.springer.com/10.1007/978-3-031-07563-6_97

  Survival for individuals with congenital heart disease (CHD) has greatly improved over the past several decades. […] There are now more adults than children with CHD. […] However, while survival has improved to adulthood, mortality in patients with CHD has shifted to adulthood. […] There is also significant morbidity in residual cardiac and noncardiac conditions. […] Additionally, acquired cardiovascular disease is a remaining issue as they reach elder years. […] This chapter will focus on the long-term issues that these individuals face in adulthood. […] Lifelong follow-up is imperative in order to improve the long-term outcome and quality of life of this vulnerable patient population.

• #2

  https://link.springer.com/article/10.1007/s12471-012-0335-1

  The population of adults with a congenital heart defect (CHD) is increasing, due to improved survival after cardiac surgery. […] The exact size of the current population of adults with CHD is unknown, but the best available evidence suggests that currently overall prevalence of CHD in the adult population is about 3000 per million. […] Regional differences in CHD prevalence have been described, due to both variations in incidence and in mortality. […] Knowledge of demographic variations of CHD may lead to new aetiological insights and may be useful for preventive therapies. […] Socioeconomic status, education, urbanisation, climatological factors, ethnicity and patient-related factors, such as comorbidity, lifestyle and healthcare-seeking behaviour, may play a role in CHD incidence and mortality.

• #2 Congenital Heart Disease in Adults | 5-Minute Clinical Consult

  https://im.unboundmedicine.com/medicine/view/5-Minute-Clinical-Consult/816626/all/Congenital_Heart_Disease_in_Adults?q=Dyspnea

  The number of patients surviving into adulthood has increased with early detection, improved imaging modalities, new medications, surgical intervention methods, and management of comorbid conditions. […] 1% of births each year in the United States (1) […] ~40,000 live births each year (1:4 severe) (2) […] AHA: 1.3 million people alive in 2015 have a congenital heart defect (3). […] Mild: 45%, moderate: 37%, severe: 14% (2)

• #2 Surveillance of Congenital Heart Defects Among Children Adolescents and…

  https://www.highergov.com/grant-opportunity/surveillance-of-congenital-heart-defects-among-children-adolescents-and-adults-350136/

  NOFO # DD24-0051 solicits non-research, cooperative agreement applications to conduct population-based surveillance of congenital heart defects (CHD) to describe health outcomes including health equity, with the goal of identifying opportunities to improve the health of all people living with CHD. […] Congenital heart defects (CHD) affect about 1% of all births in the United States, and are a leading cause of birth defect-associated infant mortality, morbidity, and healthcare costs. […] An estimated two million persons in the U.S. are living with a CHD, including over one million adults; about 12% of these affected adults have a severe CHD. […] Most current efforts to conduct population-based surveillance of CHD have focused on monitoring newborns. […] However, little data exist on the descriptive epidemiology of CHD beyond early childhood in the U.S.

• #2

  https://link.springer.com/article/10.1007/s12471-012-0335-1

  The higher risk of several major cardiac outcomes in males with CHD might well explain at least partly the increased mortality rate in men. […] Regional differences in quality of life among CHD patients have been reported and although methodological differences may play a role, sociocultural differences warrant further attention. […] To gain more insight into demographic differences around the world large international multicentre studies on the epidemiology of CHD are needed.

• #2 Improving medical care and prevention in adults with congenital heart disease—reflections on a global problem—part I: development of congenital cardiology, epidemiology, clinical aspects, heart failure, cardiac arrhythmia – Neidenbach – Cardiovascular Dia

  https://cdt.amegroups.org/article/view/22846/22176

  Today most patients with congenital heart defects (CHD) survive into adulthood. […] Unfortunately, despite relevant residua and sequels, follow-up care of adults with congenital heart disease (ACHD) is not performed in specialized and/or certified physicians or centres. […] This medical update emphasizes the current data on epidemiology, heart failure and cardiac arrhythmia in ACHD. […] The reported incidence or birth prevalence of CHD largely depends on the study design and the lack of birth registries in many countries, ranging from five to eight per 1,000 live births before the introduction of echocardiography, and from eight to 12 per 1,000 thereafter. […] Although mortality of CHD has decreased considerably, morbidity remains substantial which is widely underestimated. […] Thus, despite adequate repair almost all patients with CHD are chronically ill, and many have residua and sequels of the respective cardiac defect requiring specific follow-up and care.

• #2 Epidemiology and Mortality in Adult Congenital Heart Disease – Page 6

  https://www.medscape.com/viewarticle/760770_6

  Many adults with complex congenital heart disease remain at risk for cardiovascular complications and premature death. […] Patients with an increased risk for premature death in adulthood include those with: unoperated or surgically palliated cyanotic heart disease or Eisenmenger physiology; patients with repaired tetralogy of Fallot; patients with Fontan palliation for single ventricle physiology; and patients with subaortic right ventricles. […] In developed countries, the number of patients with unoperated cyanotic heart disease or Eisenmenger physiology will decrease. […] While most patients with subaortic right ventricles survive to adulthood and have good quality of life, they remain at risk for premature death.

• #2 Changing epidemiology of congenital heart disease: effect on outcomes and quality of care in adults | Nature Reviews Cardiology

  https://www.nature.com/articles/s41569-022-00749-y

  With prolonged survival among patients with CHD, the disease burden is shifting away from the heart and towards acquired cardiovascular and systemic complications throughout the lifespan. […] Lifespan disease trajectories for CHD populations with a high disease burden measured over prolonged time windows are becoming increasingly important to define long-term outcomes that can be improved. […] Strategically deployed, high-quality care will facilitate the integration of services that are needed to manage CHD and related comorbidities for the duration of the patients life.

• #2 CDC Role in the CHD Community – Conquering CHDsearchhamburger-close

  https://www.conqueringchd.org/cdc-role-in-the-chd-community/

  Welcome to our latest blog update, where we delve into the significant contributions of the Centers for Disease Control and Prevention (CDC) and the National Center on Birth Defects and Developmental Disabilities (NCBDD) in the realm of Congenital Heart Disease (CHD). These organizations are at the forefront of advancing our understanding and improving the lives of those affected by CHD. […] This month, Conquering CHD had the honor of engaging with the CDC directly, gaining valuable insights into their ongoing and future initiatives in CHD research and support. Our visit illuminated the extensive efforts and achievements of the CDC in this critical area of health. […] Innovative Studies and Collaborations (2012–2015): The CDC conducted a project with Emory University, the New York State Department of Health, and the Massachusetts Department of Public Health to look at the number of children and teens living with heart defects, as well as adults living with these conditions.

• #2 Surveillance of Congenital Heart Defects Among Children, Adolescents, and Adults | Research Funding

  https://researchfunding.duke.edu/surveillance-congenital-heart-defects-among-children-adolescents-and-adults

  Component A objectives include: (1) assess survival, comorbidities, healthcare utilization during the period 2021-2023, and characteristics associated with long-term outcomes among people with CHD; (2) assess health equity among people with CHD; (3) examine state and national healthcare policies that have an impact on people with CHD; (4) examine COVID-19 and related data such as health care utilization during the pandemic among people with CHD; and (5) work with local/state partners to use site-specific CHD data.

• #2 Surveillance of Congenital Heart Defects Among Children Adolescents and…

  https://www.highergov.com/grant-opportunity/surveillance-of-congenital-heart-defects-among-children-adolescents-and-adults-350136/

  Despite the public health burden, the lack of population-based surveillance precludes reliable data on people with CHD, their survival, healthcare utilization, and characteristics associated with long-term outcomes. […] Through this surveillance activity, these data will be assessed, enabling and informing efforts to improve the health and well-being of people with CHD.

• #2 Surveillance of adults with congenital heart disease: Current guidelines and actual clinical practice

  https://lirias.kuleuven.be/4154147

  Surveillance of adults with congenital heart disease: Current guidelines and actual clinical practice […] Congenital heart disease (CHD) is the most common birth defect with prevalence of 0.8%. […] Thanks to tremendous progress in medical and surgical practice, nowadays, >90% of children survive into adulthood. […] Recently European Society of Cardiology (ESC), American College of Cardiology (ACC)/ American Heart Association (AHA) issued guidelines which offer diagnostic and therapeutic recommendations for the different defect categories. […] However, the type of technical exams and their frequency of follow-up may vary largely between clinicians and centres. […] We aimed to present an overview of available diagnostic modalities and describe current surveillance practices by cardiologists taking care of adults with CHD (ACHD).

• #2 Surveillance of adults with congenital heart disease: Current guidelines and actual clinical practice

  https://lirias.kuleuven.be/4154147

  Differences exist between reported current clinical practice and published guidelines. […] This is particularly true for the care of patients with mild lesions. […] In addition, some differences exist between ESC and American guidelines, with more frequent surveillance suggested by the Americans.

• #2 Senate Introduces the Congenital Heart Futures Reauthorization Act of 2024 to Reauthorize CHD Surveillance Research Funding and Address ACHD Workforce Shortages – ACHA

  https://www.achaheart.org/about-us/news/2024/senate-introduces-the-congenital-heart-futures-reauthorization-act-of-2024-to-reauthorize-chd-surveillance-research-funding-and-address-achd-workforce-shortages/

  Despite nearly 2 million adults living with CHDs in the United States, there are only 509 ACHD board-certified physicians providing care to these patients. […] However, only 10 percent of adults with CHD receive the recommended specialized, lifelong care that they require. […] The advancement of this legislation will help ensure increased awareness, research opportunities and data collection for adults living with congenital heart disease.

• #2 Improving medical care and prevention in adults with congenital heart disease—reflections on a global problem—part I: development of congenital cardiology, epidemiology, clinical aspects, heart failure, cardiac arrhythmia – Neidenbach – Cardiovascular Dia

  https://cdt.amegroups.org/article/view/22846/22176

  Of note, medical care in specialized centers is able to significantly reduce mortality in children and adults with CHD. […] As many CHD-related problems manifest differently from acquired heart disease, established treatment regimens for acquired heart disease can only be applied to a limited extent to CHD. […] The onset of heart failure is critical with respect to morbidity and mortality of adults with CHD, where heart failure is the cause of death in up to 25% of patients. […] Current incidence and prevalence data of heart failure in CHD are not reliable, because they derive from different definitions of heart failure. […] Recognition of heart failure in CHD can be tricky and should be known to the treating physician. […] In conclusion, although today most patients with CHD survive into adulthood, many of them have relevant residua and sequels, and deeply need an experienced follow-up care in specialized and/or certified physicians or centres. […] In the field of CHD primary and secondary medical prevention will henceforth become increasingly important in order to reduce the burden of disease as well as the socioeconomic burden and costs.

• #2

  https://smw.ch/index.php/smw/article/view/2365

  A structured transition programme with a defined transfer of care from the paediatric to the adult care environment is important to avoid lapses of care in todays adolescents with CHD. […] For GUCH patients with an intervention performed decades ago and no specific cardiac follow-up in later life, referral to a specialised GUCH centre is recommended and may save lives.

• #3 Data and Statistics | Congenital Heart Defects (CHDs) | CDC

  https://www.cdc.gov/heart-defects/data/index.html

  Heart defects are common. Every 15 minutes a baby is born with a heart defect in the U.S. Heart defects are common. Heart defects affect nearly 1% of about 40,000 births per year in the United States. The prevalence of some heart defects, especially mild types, is increasing. The prevalence of other types has remained stable. The most common type of heart defect is a ventricular septal defect. About 1 in 4 babies with a heart defect have a critical heart defect. Infants with critical heart defects generally need surgery or other procedures in their first year of life. The prevalence of all types of heart defects, including critical heart defects, varies by state and by type of defect. Several methods have been used to estimate the total number of children and adults with heart defects in the United States. In 2010, about 1 million children and 1.4 million adults were living with a heart defect. In 2010, 1 in 250 to 1 in 59 children and teens were living with a heart defect. In addition, between 2011 and 2013, 1 in 157 children ages 1-10 years and 1 in 680 adolescents and adults ages 11-64 years had a heart defect noted in their health record at a medical visit. Heart defects are a leading cause of birth defect-associated infant illness and death. During 1999-2017, about 1 in every 814 deaths were attributable to heart defects in the United States. Nearly half (48%) of the deaths due to heart defects occurred during infancy (younger than 1 year of age). Survival of infants with heart defects depends on severity of the defect, timing of diagnosis, treatments, and presence of other conditions. About 97% for babies born with a non-critical heart defect. About 75% for babies born with a critical heart defect. Survival and medical care for babies with critical heart defects are improving. One-year survival for infants with critical heart defects improved from about 67% during 1979-1993 to about 83% during 1994-2005. Overall, about 81% of babies born with heart defects are expected to survive to at least 35 years of age. After the first year of life, about 93% of one-year-olds with a heart defect are expected to survive to at least 35 years of age. Adults living with heart defects are more likely than the general population to report additional cardiovascular issues. Adults with heart defects are more likely to have a disability than adults without heart defects. About 4 in every 10 adults with a CHD have a disability. In 2019, hospital costs for individuals living with heart defects in the United States exceeded $9.8 billion.

• #3 Long-Term Follow-Up of Adults with Congenital Heart Disease | SpringerLink

  https://link.springer.com/10.1007/978-3-031-07563-6_97

  Survival for individuals with congenital heart disease (CHD) has greatly improved over the past several decades. […] There are now more adults than children with CHD. […] However, while survival has improved to adulthood, mortality in patients with CHD has shifted to adulthood. […] There is also significant morbidity in residual cardiac and noncardiac conditions. […] Additionally, acquired cardiovascular disease is a remaining issue as they reach elder years. […] This chapter will focus on the long-term issues that these individuals face in adulthood. […] Lifelong follow-up is imperative in order to improve the long-term outcome and quality of life of this vulnerable patient population.

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