In 2009, various organizations across federal, state and local communities came together and agreed that they could positively impact the health of those affected by congenital heart defects (CHDs) by utilizing a public health approach to address many of the issues they face. To this end, organizational members representing the voices of providers, patents, families, clinicians and researchers joined to form the Congenital Heart Public Health Consortium (CHPHC).
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:
- Providing leadership and a unified voice for public health priorities
- Expanding opportunities for surveillance and public health research
- Informing public policy priorities that benefit public health and affected persons
With 2.4 million people currently living with CHDs in the United States, there is a widespread impact on communities and families. Collectively, CHDs are considered to be the most common type of birth defect, affecting approximately 1 in 110, or 40,000, babies each year, and are a leading cause of birth-defect related deaths worldwide. By working together and leveraging the knowledge and expertise of the many CHD stakeholders, the CHPHC is able to make progress toward improving the lives of these children, adults and families and the communities where they live through the following objectives:
- Raise awareness of CHDs and their comorbidities
- Demonstrate the prevalence of CHDs
- Demonstrate the immediate and lifelong health impacts of CHDs
- Synthesize the public health approach for CHDs
- Appraise the health care access and cost challenges related to CHDs
Since its inception, the CHPHC has identified a set of focus areas to define the scope of efforts for its committees and working groups.
Babies are born every day with CHDs. For the majority of these infants, outcomes have never been better; however, health outcomes are still uncertain for some complex CHDs. Treatment and care have improved dramatically, leading to better survival and lifelong functionality. Yet people of all ages with CHDs still face many medical, social and personal challenges. The public health systems framework developed by the CHPHC identifies opportunities that can help the population of people in the United States with CHDs live longer, healthier and more productive lives. The framework is anticipated to be a useful tool to align efforts among key stakeholders to effectively address gaps and develop strategies to reduce disease and improve outcomes. The framework includes:
- Identification and investigation including systems and population-based research
- Development of interventions and policies, including aligning stakeholders, creating public systems and policies to reduce risk, improving outcomes and ensuring equitable access and utilization care
- Implementation and evaluation, including education and quality care programs connecting individuals, healthcare and ancillary services and monitoring systems.
Public health knowledge gaps about CHDs persist, including the prevalence of CHDs across the lifespan, long-term outcomes and the delivery of health services. There are many databases with CHD data, but they are managed separately by hospitals, specialty organizations, partnerships, and public health and other governmental entities. Researchers may be familiar with some databases but not others. “Databases for Congenital Heart Defect Public Health Studies Across the Lifespan” (JAHA, October 2016) is a review article from the CHPHC that provides an understanding of the complex constellation of databases for anyone planning to study public health knowledge gaps.
The article provides a summary of existing data sources from the following categories: 1) administrative health care databases; 2) birth defects surveillance; 3) clinical CHD databases or registries; 4) surveys; and 5) vital records. The article also includes a discussion about combining databases across categories.
The intent of the CHPHC’s focus on lifelong care is to ensure that people living with CHDs maintain continuous congenital cardiology care to enhance their quality of life and overall health and wellness. The following strategies have been implemented to communicate the message that children and adults living with CHDs should receive specialized care throughout their lifetime:
- Dispel the myths that CHDs can be cured and replace them with an understanding of the need for lifelong congenital cardiology evaluations.
- Mitigate the risk for secondary disabilities that people living with CHDs may face by encouraging patients to stay in care and return to care if they have not seen their cardiologist in a long time.
- Support life planning for women with CHDs and provide education regarding the pregnancy and parenting choices they are faced with.
Reducing Risk for CHDs
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.
Neurodevelopmental and Psychosocial Quality of Life
Although once nearly fatal, both survival and life expectancy of individuals with heart defects have significantly increased with early diagnosis, improved surgical interventions and better medical management. This focus area takes a public health approach to addresses the long-term outcomes, burden to the individual and his/her family and capacity of the health and human services systems to support survivors is needed to improve quality of life.
- Developmental, physical, psychosocial and mental health disabilities are common with CHD survivors.
- Hospital costs for pediatric patients with CHD exceeded $5.6 billion in 2009,15.1% of the total costs for all U.S. hospitalizations for children and adolescents aged 0‐20 years.
- Defining and evaluating optimal care for CHD patients across the lifespan may improve outcomes.
The CHPHC is an all-volunteer, unincorporated, membership organization comprised of those organizations and individuals committed to its mission. The CHPHC is guided by a steering committee of at least seven but no more than twenty members, lead by a chairperson, vice chairperson and immediate past chairperson.
The steering committee is comprised of national formal organizations with a compelling interest in congenital heart defects. These include:
- Adult Congenital Heart Association
- Alliance for Adult Research in Congenital Cardiology
- American Academy of Pediatrics
- American College of Cardiology
- American Heart Association
- Children’s Heart Foundation
- Conquering CHD
- Congenital Heart Surgeons’ Society
- Mended Little Hearts
- National Birth Defects Prevention Network
- Society of Thoracic Surgeons
- Federal Advisors
- Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities
- National Institutes of Health, National Heart Lung and Blood Institute
- Alliance for Healthcare Research and Quality
The Congenital Health Public Health Consortium (CHPHC); it is supported by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (HHS). The outputs of the CHPHC are solely the responsibility of the CHPHC and do not necessarily represent the official views of, nor an endorsement by the member organizations of the CHPHC, CDC/HHS, or the U.S. Government.
American Academy of Pediatrics