The CHPHC factsheet regarding access to care for congenital heart defect (CHD) survivors. CHD represents a medical challenge that spans the life of a patient from birth through adulthood. With increased survival, the number of adults with CHD grows annually into the millions. Access to and maintaining lifelong care is becoming an increasing problem for this growing population. The access to care factsheet summarizes issues including the challenges to the system when specialty care is not sustained, reasons why young adults and adults fall out of care, and lastly, public health opportunities for consideration.
Through the Congenital Heart Public Health Consortium (CHPHC) we celebrate that most infants born with a CHD will live to be adults. At the same time, congenital heart defects (CHDs) remain a leading cause of birth defect-associated infant illness and death. CHPHC member organizations including Mended Little Hearts, March of Dimes and the Pediatric Congenital Heart Association offer supports to parents and families who have lost a pregnancy or their baby to CHD. CHPHC members can follow the conversation about pregnancy and infant loss on Twitter at #PregnancyAndInfantLossAwarenessMonth.
Pregnant women and those planning a pregnancy should protect their own health and that of their baby by getting their annual flu shots right away, the March of Dimes says. The March of Dimes notes that getting get sick with the flu early in pregnancy makes you twice as likely to have a baby with a serious birth defect of the brain, spine, or heart as women who don’t catch the virus. Learn more about reducing risk factors for congenital heart defects on chphc.org.
Congenital heart disease (CHD) is the #1 birth defect, affecting 40,000 births a year in the United States alone. It is estimated that about 2.4 million people of all ages were living with CHD in the United States in 2010. This growing population requires lifelong specialized care to improve outcomes and reduce healthcare costs. In the era of “big data,” numerous data sources are available and could be used to evaluate health outcomes, establish standards of care, and identify opportunities to advance care. However, the inability to meaningfully and reliably connect data sources is a major barrier to effective use of data, with significant consequences: Inability to appropriately counsel patients based on the scarcity of individual and population‐based longitudinal outcomes data. This includes barriers to integration of data from multiple sources, leading to a lack of understanding of disease progression Difficulty evaluating healthcare needs, access, and costs across the lifespan Excessive burden on healthcare institutions committed to contributing data Some challenges to linking data sets include: Challenges in negotiating data use agreements may preclude linkages Datasets may use differing data collection and reporting mechanisms Submitting data to multiple databases places burdens on healthcare institutions and providers Increased costs may prevent the use of existing data These actionable activities can considerably improve data usage: Collecting/following data from a single patient over time in a way that addresses privacy and consent issues Standardizing minimum data set requirements and reporting mechanisms Minimizing the burden of redundant data collection Increasing awareness among patients and families about the importance of data use and data sharing CONSIDER THE STORY OF SARAH ♥ Sarah is born with a CHD which was repaired surgically at less than 1 year of age. Data from newborn screening results and surgery outcomes are stored independently and not easily accessed by future providers for health care planning needs. ♥ Sarah grows to live a healthy, productive life and falls out of cardiology care at age 13 because she feels healthy and the need for continuous cardiology care was understated or misunderstood by her parents. Some of her pediatric medical records were archived, limiting access for current and future providers. ♥ Now a young woman, Sarah graduates from college, moves several times, marries and becomes pregnant. Sarah is unaware of risks for heart failure or rhythm abnormalities that can occur late after heart surgery and that may be worsened by pregnancy. Neither her primary care provider nor her obstetrician will be watching for such problems as they are unaware of the long term implications of CHD. They also have no documentation of the details of her CHD or surgical history. Sarah does not understand her own history well enough to communicate to her current providers. Sarah develops heart failure that results in preterm labor and prolonged hospitalization after delivery. ♥ Sarah’s case illustrates several problems posed by the absence of systems to maintain continuity of care and of medical records access for CHD patients as they survive and move into adulthood. For more information, visit: https://www.chphc.org
Over the past several years, the Adult Congenital Heart Association (ACHA) worked collaboratively to define and vet the criteria for accreditation and create a rigorous accreditation process. ACHA anticipates that accreditation will elevate the standard of care for the CHD community and have a positive impact on the futures of those living with this disease.
On September 14 ACHA issued a press release to announce that the following institutions that have earned the ACHA Adult Congenital Heart Disease Accredited Comprehensive Care Center designation:
- Ahmanson/UCLA Adult Congenital Heart Disease Center (Los Angeles, CA)
- Adult Congenital Heart Program, Stanford University (Palo Alto, CA)
- Adult Congenital Heart Disease Clinic at the University of Colorado Hospital (Denver, CO)
- Boston Adult Congenital Heart (BACH) and Pulmonary Hypertension Program (Boston, MA)
- University of Michigan Adult Congenital Heart Program (Ann Arbor, MI)
- Washington University Adult Congenital Heart Disease Program (St. Louis, MO)
- Adult Congenital Heart Disease Program at Children’s Hospital & Medical Center and Nebraska Medicine (Omaha, NE)
- Cincinnati Children’s Adult Congenital Heart Disease Program (CCHMC) (Cincinnati, OH)
- COACH: Columbus Ohio Adult Congenital Heart Disease & Pulmonary Hypertension Program (Columbus, Ohio)
- Adult Congenital Heart Disease Program at University of Washington & Seattle Children’s Hospital (Seattle, WA)
- Providence Adult and Teen Congenital Heart Program (PATCH) (Spokane, WA)
In their own words family members offer their perspective on living with a congenital heart defect (CHD). Read perspectives from a mom regarding parenting a child with CHD, a dad regarding the desire to “fix” CHD, and a sibling reinforcing the need for open, honest communication. The mission of the Congenital Heart Public Health Consortium (CHPHC) is to prevent CHDs and improve outcomes for affected children and adults. Even with a public health approach the impact of CHDs on individuals and their families is central to the activities and outcomes of the CHPHC.
There are so many things to do when preparing for a trip, but add a congenital heart defect (CHD) to the equation and the to-do list grows. To help alleviate some of this stress, the Adult Congenital Heart Association (ACHA) website features useful information for CHD patients to consider when planning travel, such as travel insurance, the destination’s climate, preventing blood clots and exhaustion, and travelling with medications, a pacemaker or ICD. The website also offers tips for going on a cruise or what to do upon arrival at a vacation destination. In addition, the ACHA offers the ACHD Travel Directory, which is designed to help patients find emergency adult CHD care when traveling.
The congenital heart disease (CHD) clinic directory is an online directory on American College of Cardiology’s (ACC) CardioSmart Website. The directory is designed to help patients, families and providers find specialty CHD care. With nearly 200 CHD centers and practices providing pediatric cardiology or specialty adult CHD services listed, it should be easier to connect with the right provider. Users can search providers by name, center, location or specialty — and easily determine if their chosen provider is a Fellow of the ACC.
The article “Preparing adolescents with heart problems for transition to adult care, 2009-2010 National Survey of Children with Special Health Care Needs” was published online by Congenital Heart Disease on Friday, May 19. The authors recognize the increased morbidity and mortality to adolescents with heart problems who fail to transfer to adult care. Using parent-reported data on 12- to 17-year-olds from the 2009–2010 National Survey of Children with Special Healthcare Needs, the frequency and content of transition planning discussions was assessed. Authors conclude that less than half of adolescents with heart problems had parents who discussed their child’s transition with providers, which could be contributing to the large percentage of CHD patients who do not successfully transfer to adult care. The article is available at http://dx.doi.org/10.1111/chd.12476.