Adult congenital heart disease

Common Name(s)

Adult congenital heart disease

Adult congenital heart disease (CHD) is a heart abnormality that is present at birth (congenital) but causes complications in adulthood. The heart is a muscular organ that pumps blood to all the tissues in your body through a network of blood vessels. The right side of the heart pumps blood through the lungs where it picks up oxygen. The left side of the heart receives the blood containing oxygen and pumps it to the rest of your body. Different types of CHDs include defects in the walls of the heart (known as a hole in the heart), which can cause oxygenated blood to mix with deoxygenated blood; defects in the valves between the chambers of the heart, which may cause abnormal blood flow; and heart muscle abnormalities, which can lead to heart failure. Most CHDs first appear while a baby is still developing in the womb.

Symptoms of a CHD may occur in adulthood for two reasons: they may recur many years after the initial repair or the CHD may be mild enough not to cause complications during infancy but can evolve into a more serious issue as an adult. Common CHD symptoms may include an abnormal heart rhythm, a bluish tint to the skin, shortness of breath, tiring quickly when active, dizziness, fainting, and development of swollen body tissues or organs.

To diagnose adult CHD, a physician will conduct a physical exam and several diagnostic tests. These may include an echocardiogram (image of the heart produced by sound waves), electrocardiogram (measurement of electrical activity in the heart), MRI (image of the heart produced by magnetic field and radio frequency), chest x-ray (electromagnetic image of the heart), or cardiac catheterization (measurement of blood flow and pressure in the heart). Treatment of CHD depends on the severity, as some mild heart defects do not require treatment while others may need medication or surgery. Talk with a physician about the right treatment for you.

Source: Advocacy organizations associated with the condition.

 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Adult congenital heart disease" for support, advocacy or research.

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Congenital Heart Information Network

C.H.I.N. is a national organization that provides reliable information, advocacy, support services, financial assistance and resources to families of children with congenital heart defects and acquired heart disease, and adults with congenital heart defects.

Last Updated: 6 Apr 2015

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How do you compare to others with this condition?

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Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Adult congenital heart disease" for support, advocacy or research.

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Congenital Heart Information Network

C.H.I.N. is a national organization that provides reliable information, advocacy, support services, financial assistance and resources to families of children with congenital heart defects and acquired heart disease, and adults with congenital heart defects.

http://tchin.org

Last Updated: 6 Apr 2015

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General Support Organizations

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Adult congenital heart disease" returned 100 free, full-text research articles on human participants. First 3 results:

Trends in the Burden of Adult Congenital Heart Disease in US Emergency Departments.
 

Author(s): Shikhar Agarwal, Karan Sud, Sahil Khera, Dhaval Kolte, Gregg C Fonarow, Julio A Panza, Venu Menon

Journal: Clin Cardiol. 2016 Jul;39(7):391-8.

 

We assessed trends in incidence, in-hospital mortality, and admission among patients with adult congenital heart disease (ACHD) presenting to the emergency department (ED) from 2006 to 2012.

Last Updated: 16 Jul 2016

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Nationwide Survey of the Transfer of Adults With Congenital Heart Disease From Pediatric Cardiology Departments to Adult Congenital Heart Disease Centers in Japan.
 

Author(s): Ryota Ochiai, Hitoshi Kato, Naomi Akiyama, Fukiko Ichida, Atsushi Yao, Ryo Inuzuka, Koichiro Niwa, Isao Shiraishi, Toshio Nakanishi

Journal: Circ. J.. 2016 Apr;80(5):1242-50.

 

Current Japanese transfer practices for adult congenital heart disease (ACHD) patients in pediatric departments are elucidated in this study. The focus was on 149 facilities (from the Japanese Society of Pediatric Cardiology and Cardiac Surgery Subspecialty Board and the Japanese ...

Last Updated: 25 Apr 2016

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Rehospitalization Is a Major Determinant of Inpatient Care Costs in Adult Congenital Heart Disease.
 

Author(s): Ari M Cedars, Sara Burns, Eric L Novak, Amit P Amin

Journal: J. Am. Coll. Cardiol.. 2016 Mar;67(10):1254-5.

 

Last Updated: 11 Mar 2016

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Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Adult congenital heart disease" returned 22 free, full-text review articles on human participants. First 3 results:

Emerging Research Directions in Adult Congenital Heart Disease: A Report From an NHLBI/ACHA Working Group.
 

Author(s): Michelle Gurvitz, Kristin M Burns, Ralph Brindis, Craig S Broberg, Curt J Daniels, Stephanie M P N Fuller, Margaret A Honein, Paul Khairy, Karen S Kuehl, Michael J Landzberg, William T Mahle, Douglas L Mann, Ariane Marelli, Jane W Newburger, Gail D Pearson, Randall C Starling, Glenn R Tringali, Anne Marie Valente, Joseph C Wu, Robert M Califf

Journal: J. Am. Coll. Cardiol.. 2016 Apr;67(16):1956-64.

 

Congenital heart disease (CHD) is the most common birth defect, affecting about 0.8% of live births. Advances in recent decades have allowed >85% of children with CHD to survive to adulthood, creating a growing population of adults with CHD. Little information exists regarding survival, ...

Last Updated: 22 Apr 2016

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COCATS 4 Task Force 14: Training in the Care of Adult Patients With Congenital Heart Disease.
 

Author(s): Carole A Warnes, Ami B Bhatt, Curtis J Daniels, Linda D Gillam, Karen K Stout

Journal: J. Am. Coll. Cardiol.. 2015 May;65(17):1887-98.

 

Last Updated: 7 May 2015

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Call for a disease-specific patient-reported outcome tool in adult congenital heart disease.
 

Author(s): Ari M Cedars, John A Spertus

Journal: Circ Cardiovasc Qual Outcomes. 2014 Nov;7(6):971-4.

 

Last Updated: 22 Nov 2014

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Symptoms, Diagnosis, and Treatment

There are currently no related results available in GeneReviews.

There are currently no related results available in Genetic Testing Registry.

 
 
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Clinical Trial Information This information is provided by ClinicalTrials.gov

Northwest Adult Congenital Heart Disease Observatory
 

Status: Not yet recruiting

Condition Summary: Congenital Heart Disease

 

Last Updated: 7 Sep 2016

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Start-to-Sport - Home-based Exercise for Adolescents and Adults With Congenital Heart Disease
 

Status: Recruiting

Condition Summary: Congenital Heart Defect

 

Last Updated: 18 Mar 2016

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Last Updated: 21 Dec 2015

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