Materiały źródłowe

• #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

  https://pmc.ncbi.nlm.nih.gov/articles/PMC6331379/

  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. […] While primary care physicians have the important and responsible task to set the course for adequate diagnosis and treatment early and to refer patients to appropriate care in specialized ACHD-facilities, they should actively encourage ACHD to pursue follow-up care in specialized facilities who can provide responsible and advanced advice. […] In the near future, preventive medicine measures will be of paramount importance for the care of patients with congenital heart defects (CHD). […] 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 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

  In the near future, preventive medicine measures will be of paramount importance for the care of patients with congenital heart defects (CHD) (1-3). […] 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.

• #3 Congenital heart disease in adults – Symptoms and causes – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/adult-congenital-heart-disease/symptoms-causes/syc-20355456

  Because the exact cause of most congenital heart disease is unknown, it may not be possible to prevent these heart conditions. Some types of congenital heart disease occur in families. If you have a high risk of giving birth to a child with a congenital heart defect, genetic testing and screening may be done during pregnancy.

• #4 Congenital Heart Disease: Symptoms & Treatment

  https://my.clevelandclinic.org/health/diseases/21674-congenital-heart-disease

  Can congenital heart disease be prevented? There arent any proven strategies to prevent CHD. People are born with it, usually from unknown causes. Its beyond their control. […] Scientists dont have all the answers yet as to what causes congenital heart defects other than random gene mutations. But some things like smoking, alcohol and certain medications place you at a higher risk, and you should avoid these during pregnancy. […] You should follow your healthcare providers instructions during pregnancy, including: Dont use recreational drugs. Get all recommended screening tests during pregnancy to detect problems as early as possible. Manage any health conditions, such as diabetes and phenylketonuria. Stop smoking and avoid secondhand smoke. Avoid alcohol.

• #5

  https://www.nhs.uk/conditions/congenital-heart-disease/prevention/

  As so little is known about the causes of congenital heart disease, there’s no guaranteed way of avoiding having a baby with the condition. […] However, if you’re pregnant, the following advice can help reduce the risk: […] Take 400 micrograms of folic acid supplement a day during the first trimester (first 12 weeks) of your pregnancy this lowers your risk of giving birth to a child with congenital heart disease, as well as several other types of birth defect. […] If you have diabetes, make sure it’s controlled.

• #6 Congenital Heart Public Health Consortium

  https://www.aap.org/en/patient-care/congenital-heart-defects/congenital-heart-public-health-consortium/?srsltid=AfmBOoo9MjfT8zc192i46gRSeLiOaYxJyMhh5AdPvZ6ANStFHvZkDkJh

  The mission of the CHPHC is to prevent congenital heart defects and improve outcomes for affected children and adults. The Consortium achieves its mission by: […] One focus of the Consortium is prevention of CHDs. Research suggests that there may be certain prevention activities that a mother (and father) can do to help increase the chance of having a baby with a healthy heart. […] Take 400 mcg (0.4) mg) or more of folic acid before pregnancy starts. […] Maintain a healthy weight, participate in regular physical activity and follow a healthy diet. […] Talk to their doctor if they have a chronic condition, such as diabetes (may be unrecognized), epilepsy, PKU or high blood pressure, or if they are taking medications. […] Avoid secondhand smoke. […] Stay up to date with immunizations, including rubella. […] Treat high fever early.

• #7 Congenital Heart Disease: Types, Symptoms, Causes, and TreatmentHealthline

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

  How Can Congenital Heart Disease Be Prevented? […] Women who are pregnant or plan on becoming pregnant can take certain precautions to lower their risk of giving birth to a baby with a congenital heart defect: […] If you have diabetes, make sure your blood sugar levels are under control before becoming pregnant. It’s also important to work with your doctor to manage the disease while pregnant. […] If you have a family history of congenital heart defects, ask your doctor about genetic screening. Certain genes may contribute to abnormal heart development. […] Avoid drinking alcohol and using illegal drugs during pregnancy.

• #8 Congenital heart disease in adults – Augusta HealthSearchClose SearchSearch IconSearch IconClose Search IconMobile Menu IconMobile Menu Close IconInstagramFacebookTwitterYoutube

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

  Some types of congenital heart disease occur in families (inherited). If you have or someone in your family has congenital heart disease, screening by a genetic counselor may help determine the risk of certain heart defects in future children. […] If you are at high risk of endocarditis, your care provider may recommend taking antibiotics one hour before dental cleanings. Regular dental checkups are important. Healthy gums and teeth reduce the risk that bacteria will enter the bloodstream.

• #9 Adult Congenital Heart Disease Clinic | UCSF Health

  https://www.ucsfhealth.org/clinics/adult-congenital-heart-disease-clinic

  Thanks to advances in both surgical treatments and medications, more and more children born with heart defects are surviving to adulthood. […] While most adults with congenital heart disease lead full and active lives, you may experience lifelong problems related to your heart defect, including abnormal heart rhythms, heart failure or deterioration of heart repair done in childhood. […] The UCSF Adult Congenital Heart Disease Clinic offers comprehensive care that includes early detection of problems, treatment to prevent complications and surgical repair of defects. For adults with congenital heart disease, at least one visit at a center focused on the disease is recommended. For people with mild levels of disease, regular monitoring of the defect and heart function may be the only treatment necessary. For others, treatment ranges from medication to surgery, including heart and lung transplants.

• #10 Adult Congenital Heart Disease Program | Full Spectrum Congenital Heart Defects Care near Cleveland, OH | University Hospitals

  https://www.uhhospitals.org/services/heart-and-vascular-services/conditions-and-treatments/adult-congenital-heart-disease

  Most patients with congenital heart disease undergo repair during infancy or childhood; but it’s important to remember that these patients are not cured but only repaired, and often require further treatments for their heart defect as adults. […] Because of this, CHD patients require lifelong follow up care with a specialized team of physicians and nurses who understand their unique complexities. […] It is important for patients with congenital heart disease to see pediatric heart specialists along with the adult specialists. […] Now, because of the many medical advances in CHD care, there are many adults living with congenital heart disease, making the partnership between pediatric and adult specialists key to maintaining optimal health. […] The close collaboration between pediatric and adult caregivers helps manage these patients with congenital heart defects and facilitate a seamless transition into adult care.

• #11 Adult Congenital Heart Disease (ACHD) Program | Cincinnati Children’s

  https://www.cincinnatichildrens.org/service/a/achd

  Routine Follow-Up Care as an Adult Is Essential. The future can be bright for people living with congenital heart disease. But medical problems can arise years or decades after a heart condition is repaired during childhood. Every adult with CHD should see a specialist trained in adult congenital heart disease at least once. In most cases, patients should continue to see an ACHD specialist to monitor potential medical problems. […] Routine check-ups are critical, even when you dont have symptoms. This is because as a repaired heart grows and adapts through life, negative changes can occur. This includes heart rhythm disturbances, leaky valves, strokes, obstruction or even heart failure. […] A heart affected by congenital heart disease is unique. For that reason, the gold standard of care today for adults with CHD is regular follow-up and treatment by specialists trained in adult congenital heart disease. In our Adult Congenital Heart Disease Program at Cincinnati Childrens, we offer that gold standard of care.

• #11 Adult Congenital Heart Disease (ACHD) Program | Cincinnati Children’s

  https://www.cincinnatichildrens.org/service/a/achd

  Our ACHD Program ensures you receive the care you need, whether youre a teenager or an adult. At our center, youll experience ongoing, lifelong surveillance for patients with even the most complex congenital heart defects in order to prevent complications. […] Tailored education for your specific condition; this includes family planning and pregnancy, exercise goals, symptom identification, infection prevention and genetic counseling. […] Care that is coordinated with your other physicians, including primary care physicians and other specialists you may see. […] A transition plan to help teens move smoothly from pediatric cardiology care to our outstanding adult program that will follow them throughout adulthood.

• #12 Guest Post: Navigating Care for Young Adults With Congenital Heart Disease | AAFP

  https://www.aafp.org/pubs/afp/afp-community-blog/entry/navigating-care-for-young-adults-with-congenital-heart-disease.html

  According to the Centers for Disease Control and Prevention, congenital heart disease (CHD) affects nearly 1% of children born each year in the United States. […] Individuals with CHD require lifelong cardiac surveillance to monitor their condition and detect any potential complications. Regular cardiology follow-ups, including echocardiography and electrocardiography, play a vital role in identifying changes in cardiac function and structure. […] It is important for young adults with CHD to have regular check-ups and to adhere to the recommended surveillance protocols. […] For young women with CHD, pregnancy planning requires careful consideration and specialized care. […] It is essential for these women to receive preconception counseling from a multidisciplinary team, including cardiologists with expertise in adult congenital heart disease.

• #12 Guest Post: Navigating Care for Young Adults With Congenital Heart Disease | AAFP

  https://www.aafp.org/pubs/afp/afp-community-blog/entry/navigating-care-for-young-adults-with-congenital-heart-disease.html

  By optimizing cardiac function and closely monitoring the pregnancy, health care providers can ensure the best possible outcomes for both the mother and the baby. […] By facilitating a smooth transition to adult primary and cardiology care, ensuring lifelong cardiac surveillance, and offering specialized care for pregnancy planning, family physicians can empower these individuals to lead healthy and fulfilling lives.

• #13 Management of Adult Congenital Heart Disease in Primary Care

  https://www.clinicaladvisor.com/features/management-adult-congenital-heart-disease-primary-care/

  Patients with ACHD should undergo transthoracic echocardiography with serial assessments based on the anatomic and physiologic severity and patient status. […] Primary care providers must continue to stay up to date on the current screening guidelines and research regarding ACHD. Nurse practitioners and PAs can become advocates for their patients, providing proper education, screening, and treatment to better the lives of each adult with these conditions.

• #13 Management of Adult Congenital Heart Disease in Primary Care

  https://www.clinicaladvisor.com/features/management-adult-congenital-heart-disease-primary-care/

  Many adolescents and young adults with CHD face several challenges when transitioning from pediatric to adult providers. The main reasons for the gap in care are the lack of knowledge among patients about the need for follow-up care, the inability to find specialized providers, and patients feeling healthy. Primary care providers can play a key role in educating these patients about the need for lifelong specialized care. […] Similar to patients without ACHD, lifestyle modifications to prevent other cardiovascular diseases is imperative. The lifespan of patients with ACHD is increasing and, therefore, so is the risk for cardiovascular disease in this population. Prompt education, prevention, treatment, and management for diseases such as obesity, diabetes mellitus, hypertension, hyperlipidemia, and coronary artery disease are vital. Study findings suggest that this population is more receptive to recommendations and may continue to benefit from repetitive guidelines about diet, exercise, and modifiable risk factors.

• #14 Congenital Heart Disease, Eau Claire – Mayo Clinic Health System

  https://www.mayoclinichealthsystem.org/locations/eau-claire/services-and-treatments/cardiology/diseases/congenital

  If you’re an adult with congenital heart disease, you’re at risk of developing complications — even if you had surgery to repair a defect during childhood. Lifelong follow-up care is important. […] Follow-up care may include regular checkups and occasional bloodwork and imaging exams to screen for complications. How often you’ll need to see your health care provider will depend on whether your congenital heart disease is mild or complex.

• #15 Care of Adults With Congenital Heart Disease: Key Points

  https://www.acc.org/latest-in-cardiology/ten-points-to-remember/2024/12/16/19/24/adults-with-congenital-heart

  The following are key points to remember from a state-of-the-art review on the care of adults with congenital heart disease for noncongenital cardiologists: […] Counseling regarding appropriate vocations, exercise prescription and restrictions if necessary, and pregnancy risks and management are key parts of the management of adults with congenital heart disease. […] Regular follow-up at specialized centers for more complex congenital heart disease is required. Even patients with simple lesions benefit from intermittent evaluation at experienced adult congenital heart disease centers. Direct communication between local and tertiary centers with a collaborative approach allows for optimal patient care.

• #16

  https://link.springer.com/article/10.1007/s11886-024-02103-9

  There are several domains that encompass preventive measures in ACHD including education, proper oral hygiene, skin care, and antibiotic prophylaxis. […] Providers caring for ACHD patients should continually discuss with them the potential lifelong risk of IE including its clinical presentation and importance of early diagnosis. […] A significant proportion of patients with CHD are unaware of the correlation between oral health and heart disease. […] The American College of Cardiology (ACC) and the AHA recommend meticulous oral care and routine preventive care by a dentist or oral hygienist for patients with CHD. […] Antibiotic prophylaxis (AP) is used to prevent IE in patients at high risk undergoing invasive dental procedures. […] The AHA and the ACC recommends AP for patients with underlying cardiac conditions associated with the highest risk of adverse outcome from IE, such as those with a prosthetic heart valve, a past history of IE, unrepaired cyanotic congenital heart disease, residual shunt adjacent to prosthetic material, and cardiac valvulopathy following cardiac transplantation. […] For optimal effect, antibiotic prophylaxis should be administered 30-60 min prior to the procedure. […] The 2023 ESC Guidelines in IE discourages the use of clindamycin and azithromycin, while the AHA no longer recommends clindamycin due to the higher risk profile of side effects.

• #17 Adults with congenital heart disease: patient knowledge of endocarditis prophylaxis – PubMed

  https://pubmed.ncbi.nlm.nih.gov/7808052/

  Objective: To determine whether adults with congenital heart disease have adequate knowledge of infective endocarditis and endocarditis prophylaxis and to ascertain whether an educational program effectively improves patient knowledge and compliance. […] Many adults with congenital heart disease have inadequate knowledge of their cardiac lesion, endocarditis, and endocarditis prophylaxis. Educational efforts for adults with congenital heart disease need to be updated and reinforced regularly.

• #18 What do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education

  https://lirias.kuleuven.be/85832

  OBJECTIVE: To assess how much adults with congenital heart disease understand about their heart defect, its treatment, and the preventive measures necessary to avoid complications. […] CONCLUSIONS: Adults with congenital heart disease have important gaps in their knowledge about their condition. The results of this study can be used as a basis for developing or optimising structured educational interventions to enhance patients’ health behaviour.

• #19 New Guidelines Developed for Adult Congenital Heart Disease

  https://www.healthday.com/healthpro-news/cardiovascular-diseases/new-guidelines-developed-for-adult-congenital-heart-disease-621144.html

  Clinicians should discuss infective endocarditis prophylaxis with their patients […] The American College of Cardiology/American Heart Association 2008 Guidelines for Adults with Congenital Heart Disease (ACHD) specifically recommend no prophylaxis for infective endocarditis before gastrointestinal or genitourinary procedures […] The ACHD Writing Committee recommends that clinicians should discuss with their patients the lack of scientific evidence for infective endocarditis prophylaxis. However, the committee finds it reasonable to offer antibiotic prophylaxis before dental procedures to patients with a prosthetic cardiac valve or those with prior infective endocarditis. Patients with defective and repaired cyanotic congenital heart disease, involving surgically constructed palliative shunts and conduits, prosthetic materials or devices, may also be offered similar preventative care.

• #20

  https://link.springer.com/article/10.1007/s11883-022-01034-6

  There are over a million adults living with congenital heart disease (CHD) in the USA. […] Preventative strategies for ASCVD are underutilized in ACHD patients. […] As these patients are followed for a lifetime by cardiologists, we can truly pursue primary prevention in this aging population.

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

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

  Although you may not be able to prevent congenital heart disease, you can take steps as an adult to help prevent or lower your risk of further health complications. […] For example, you could: Exercise regularly under the guidance of your doctor or a cardiac rehabilitation specialist. Follow a heart-healthy eating plan, such as the Mediterranean diet or the Dietary Approaches to Stop Hypertension diet. Get regular checkups for your heart and your overall health. Maintain a moderate body weight that’s healthy for you. Manage your blood pressure, cholesterol, and blood sugar levels. Stop smoking, if applicable.

• #22

  https://www.healio.com/news/cardiology/20150421/aha-issues-recommendations-for-older-adults-with-congenital-heart-disease

  Certain adults with congenital heart disease also should be monitored closely for pulmonary arterial hypertension, and treatment with pulmonary arterial vasodilator drugs can be useful, Bhatt and colleagues wrote. […] All patients in this population should be encouraged to attain an ideal body weight, eat healthy and engage in regular physical activity. […] We hope this statement serves as a foundation for the care of the older adult with [congenital heart disease], Bhatt and colleagues wrote.

• #23 Statin therapy prescribed less often in adult congenital heart disease

  https://www.healio.com/news/cardiology/20180227/statin-therapy-prescribed-less-often-in-adult-congenital-heart-disease

  Adults with congenital heart disease were less likely to be prescribed statin therapy for primary prevention compared with those without the condition regardless of 10-year atherosclerotic CVD risk scores, according to a study published in The American Journal of Cardiology. […] „As the [adults with congenital heart disease] population is living longer, ASCVD has increasing implications on their overall health. Primary care physicians, primary cardiologists and ASCVD cardiologists alike must engage in active surveillance of ASCVD risk factors and prioritize guideline-based primary prevention in this population to further mitigate ASCVD risk.” […] Statin therapy was appropriately prescribed to 42.3% of patients with congenital heart disease compared with 59% in the control group. […] „It is possible that shorter life expectancy of patients with [adult congenital heart disease] makes primary prevention of ASCVD seem less important. Additionally, the better control of risk factors such as LDL, obesity and smoking in patients with [adult congenital heart disease] as compared with their peers may influence the perception of risk and decision, consciously or subconsciously, to not initiate statin or aspirin therapy.”

• #24 Congenital Heart Disease Guidelines Target Adults | MDedge Family Medicine

  https://www.mdedge9-ma1.mdedge.com/familymedicine/article/31090/cardiology/congenital-heart-disease-guidelines-target-adults/page/0/1

  However, antibiotic prophylaxis against infectious endocarditis is not recommended for nondental procedures in the absence of active infection, the authors wrote in the guidelines. […] With respect to contraception, oral estrogen-containing drugs are not recommended for patients at risk of thromboembolism, including those with pulmonary arterial hypertension or cyanosis related to an intracardiac shunt, according to the guidelines. […] Patients are advised to consult with an adult CHD expert to determine a labor and delivery management plan prior to becoming pregnant. […] The guidelines also include comprehensive information on the clinical features, diagnosis, treatment options, activity limitations, pregnancy risks, and preventive strategies related to specific lesions.

• #25 Adult Congenital Heart Disease | Mount Sinai – New York

  https://www.mountsinai.org/care/heart/services/congenital-heart-disease

  If you do have congenital heart disease, you may need to take additional precautions. Women with congenital heart defects face higher risks for both themselves and the fetus. If you have a complex cardiac defect, you have a greater risk of complications than if you have a simple heart defect. Fortunately, most women with congenital heart defects can have a healthy pregnancy. There are some conditions where we do not recommend pregnancy. […] In general, we recommend our heart patients follow these tips for a healthy pregnancy: Follow your provider’s direct orders, Avoid alcohol, drugs, and tobacco products, Eat healthy, Get plenty of rest, Take all prescribed medications. […] We fully expect our patients with congenital heart defects to survive to adulthood, have a family, and lead a full adult life. To help you achieve this, we provide comprehensive care for you and your fetus during pregnancy. We also offer extensive follow-up care after you give birth.

• #26 Prophylaxis protects infants with congenital heart disease from severe forms of RSV infection: an Italian observational retrospective study | Italian Journal of Pediatrics | Full Text

  https://ijponline.biomedcentral.com/articles/10.1186/s13052-022-01399-z

  Our study provides evidence of the efficacy of palivizumab in protecting patients with hemodynamically significant CHD under the age of 2 years from RSV disease and its life-threatening complications. […] Reducing hospitalisation rate, morbidity, and mortality in this category of patients, passive immune prophylaxis with palivizumab may impact healthcare resource availability and utilisation. […] Therefore, the best strategy to limit the spread of RSV infection and protect patients at risk of severe complications is the adoption of preventive strategies of immunization. […] In Italy, prophylaxis with palivizumab is recommended, as indicated by regulatory authority (Regione Emilia-Romagna) and scientific societies (Italian Society of Neonatology, Italian Society of Pediatric Cardiology and Congenital heart Diseases) in children under the age of 2 years with hemodynamically significant CHD (HS-CHD), with congestive heart failure that requires medical therapy, cyanosis with systemic saturation less than 90%, or pulmonary hypertension, and in children post cardiac transplantation; prophylaxis in the 2nd year of life is recommended when there is still a need of medical therapy on an ongoing basis.

• #27 Adult congenital heart disease and the COVID-19 pandemic | Heart

  https://heart.bmj.com/content/106/17/1302

  Adults with congenital heart disease (ACHD) may be at high risk in the case of COVID-19. […] This document aims to give an overview of relevant data and outline our pragmatic approach to disease prevention and management. […] To avoid infection, we recommend self-isolation and exemption from work for these cohorts. […] We advise patients to adhere to local regulations, practice physical distancing, meticulous hygiene and to wear face masks to reduce viral spread depending on the situation. […] For practical reasons, we categorise patients into a low-risk, intermediate-risk and high-risk group. […] For high-risk patients, we would recommend self-isolation at home and exemption from work on an individual basis. […] This classification while in need of refinement as new data emerge may serve as a basis for recommending eligibility to continue work or educational engagement versus shielding at home, thus, balancing patients economic and psychosocial needs versus the perceived risk of adverse outcome in case of contracting COVID-19.

• #28 Equipping Campus Health to Care for Young Adults with Congenital Heart Disease

  https://www.aap.org/en/patient-care/congenital-heart-defects/equipping-campus-health-to-care-for-young-adults-with-congenital-heart-disease/?srsltid=AfmBOopEBYmzo5E-e1On3vSEGK0UmMIBUub6ZCxLYHCnTHrvmq7muQsR

  Currently, an estimated 300,000 US adolescents are living with a heart condition, with the adult CHD population growing by 40,000 to 50,000 each year. […] Ensuring that preventive care and ACHD consults occur and that appropriate urgent/emergent care plans are in place for these students is critical. […] We call on health care providers, university or college health centers, families, and health care systems to work in concert to inform students with CHD about the importance of maintaining cardiology follow-up care during their college careers and make such follow-up care easily accessible to those students. […] Empower students with CHD to engage in their own cardiology care and preparation for college, preparation that includes discussion about health insurance coverage. […] Establish services with a local pediatric or adult congenital cardiologist for urgent or emergent situations.

• #29 First registry for adult congenital heart disease – Children’s National

  https://innovationdistrict.childrensnational.org/first-registry-specifically-for-adult-congenital-heart-disease-launches/

  Although nearly 2 million adults in the United States are living with a congenital heart defect, its been historically difficult to gather data on these conditions and to identify patient needs. […] The Congenital Heart Initiative aims to: […] Understand how to improve the quality of life for adults with congenital heart defects […] Improve our understanding of the ACHD population for patients, providers and researchers […] Inform future research projects of needs within the ACHD community […] Spur innovation within congenital heart disease treatment […] Fundamentally change the way America understands and cares for ACHD patients. […] By reshaping the way that ACHD is understood by both patients and clinicians, the registry can improve the lives and futures of adults living with congenital heart defects.

• #29 First registry for adult congenital heart disease – Children’s National

  https://innovationdistrict.childrensnational.org/first-registry-specifically-for-adult-congenital-heart-disease-launches/

  We hope that this effort will be the start of a resource to allow patients and researchers to come together and learn more, together, about congenital heart disease. […] People with congenital heart disease who are 18 years of age or older may enroll in the registry and volunteer to participate in research conducted within the initiative.

• #30 Longitudinal Care of Patients with Adult Congenital Heart disease – Mass General Advances in Motion

  https://advances.massgeneral.org/cardiovascular/video.aspx?id=1036

  We think a little bit about what the causes for this under treatment might be, and yes there is some associated liver disease, although in our population that was only limited to two patients. But there is also a lack of understanding that during congenital heart disease visits, we need to make time for thinking about these people as older adults and emphasize cardiac prevention. […] Using this research, we actually built a health and wellness program where we have separate visits to talk about atherosclerotic disease prevention rather than congenital heart disease management.

• #30 Longitudinal Care of Patients with Adult Congenital Heart disease – Mass General Advances in Motion

  https://advances.massgeneral.org/cardiovascular/video.aspx?id=1036

  We have a real opportunity in adults with congenital heart disease. We follow them from a young age. We take them through their 20s and 30s and 40s. And in our ability to do that, not only do we take care of congenital heart disease, but we get to prevent the development of atherosclerotic cardiovascular disease. […] The challenge for our research is figuring out who the specific populations are with congenital heart disease, who are at greater risk for developing atherosclerotic disease. […] We hope that this is a healthy population because we’ve done a good job with congenital heart disease. But even more so, we hope that this is a population who doesn’t develop any new cardiovascular disease in their older years. […] In our study, we assessed the risk of atherosclerotic disease in adults with congenital heart disease as well as statin use for treatment of people who had atherosclerotic risk factors.

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