April 5th, 2013
Are Adults with Congenital Heart Disease Falling Off the Radar?
Michelle Gurvitz, MD MS and John Ryan, MD
John Ryan interviews Michelle Gurvitz, lead author of a new study published in JACC, that characterizes the gaps in care that patients with congenital heart disease experience as they move from adolescence to adulthood.
THE STUDY
A total of 922 adults (54% women) who presented for the first time to one of 12 adult congenital heart disease centers completed a survey about gaps in cardiology care. Of those patients, 42% reported a gap in cardiology care of more than 3 years, and 8% reported a gap of longer than a decade. The mean age at the first reported gap was 19.9 years. Gaps in care >3 years were reported by 59% of patients with mild disease, 42% of patients with moderate disease, and 26% of patients with severe disease. Clinic location significantly predicted gaps, but gender, race, and education level did not.
INTERVIEW WITH THE EXPERT
John Ryan: As patients with congenital heart disease survive longer, how would you ensure a smooth transition from adolescent to adulthood cardiology care, a particularly high-risk time for gaps in care, as your study identifies?
Michelle Gurvitz: There are many contributors to these gaps. One of the largest areas to address is educating patients, parents, and providers about lifelong care. Our study revealed that referral from a healthcare provider and encouragement from a family member are two of the most common reasons that adults with congenital heart disease return to cardiology care. Patients and their families need to hear the message of lifelong, age-appropriate care from their pediatricians and pediatric cardiologists. Just as all patients move from a pediatrician to an internist for primary care, a patient with congenital heart disease must learn at an early age that he or she must take responsibility for the lifelong care that the specific condition requires.
The transition from a pediatric cardiologist can be emotionally stressful for the patient, family, and even the physician. Providing a specific referral and helping the patient book an appointment can minimize logistics and ease stress. Similarly, healthcare providers to adults (e.g., general internists, obstetrician/gynecologists, general cardiologists) must be educated that patients with congenital heart disease need ongoing cardiology care, including referrals to adult congenital cardiology subspecialists. Educational efforts are already underway. The American College of Cardiology and the Adult Congenital Heart Association are piloting a program called PATCH that aims to educate general adult cardiologists about care and referrals for patients with congenital heart disease. Undoubtedly, insurance difficulties and geographical barriers will always create some gaps in care, but awareness at all levels among all parties will help to empower patients and to minimize the gaps that are avoidable.
Ryan: On a national level, are adults with congenital heart disease being cared for by PCPs, general cardiologists, or specialists in congenital heart disease?
Gurvitz: Unfortunately, we lack accurate national data. Estimates on birth and survival in patients with congenital heart disease lesions suggest that about 1 million people are living with congenital heart disease in the U.S. The Adult Congenital Heart Association website has a self-reported clinic directory listing <60,000 U.S. patients in specialty adult congenital heart disease clinics. We also know that some patients continue to receive care from pediatric cardiologists as adults, but this is probably not a majority. Many adult patients with congenital heart disease have PCPs and ob/gyns, and some have general adult cardiologists. As part of the Congenital Heart Futures Act, the CDC has funded a cooperative agreement with three sites to examine prevalence and surveillance of adults with congenital heart disease in the U.S., so more data should be forthcoming.
Ryan: When adults with congenital heart disease return to a provider after a gap in care, from whom do you recommend that they seek that care?
Gurvitz: Regarding where adult CHD patients should receive care, that depends on the anatomic and physiologic type of congenital condition and on the interventions a patient has had (and their sequelae). Other concomitant medical conditions, which of course increase as patients age, also matter. The 2008 ACC/AHA adult congenital heart disease guidelines include recommendations for follow-up for different types of congenital heart disease. In general, patients with moderate or complex conditions (e.g., more complex than an atrial or ventricular septal defect or single valve disease like aortic or pulmonary stenosis) should have regular follow-up with a specialty adult congenital heart disease physician. Patients with a simple congenital heart condition should have a single visit to a specialty care center during their adult years, to enhance education and awareness, as well as to develop a plan of care should urgent needs develop. In addition, if an adult with congenital heart disease returns to care after a gap, I believe that he or she should have at least one consultative visit with a congenital heart disease specialist to create a long-term plan and assess condition-specific issues. After this visit, patients with less complex conditions may not require regular, specialized congenital heart disease care.
If all adults with congenital heart disease were receiving recommended subspecialty care, the number of providers need to serve them would probably be insufficient. In November 2012, the American Board of Medical Specialties announced a new certification in adult congenital heart disease. The first exams should be offered in 2015, and estimates suggest that adult congenital heart disease subspecialists will continue to rise in number and availability.
Ryan: In your study, 42% of surveyed patients had more than a 3-year gap in cardiology care. “Changing or losing insurance” accounted for this gap in a significant proportion of patients with complex congenital heart disease. Do you anticipate that provisions of the Affordable Care Act will reduce such gaps in care?
Gurvitz: The Affordable Care Act shows promise for addressing the insurance problem in our patient population. The already-enacted provision that children can remain on their parents’ insurance until age 26 is helpful, as are the reductions in barriers for patients with preexisting conditions. However, having insurance is only part of the issue. Many patients need expensive tests (e.g., MRI, echocardiogram) and procedures (e.g., catheterization, surgery, pacemaker) that may require copayments or need to be performed at out-of-network specialty centers. With the concerted effort of providers and insurance companies, these barriers can sometimes be overcome, but they may remain for many patients.
How often have you encountered patients with congenital heart disease who experience gaps in care?
2 Responses to “Are Adults with Congenital Heart Disease Falling Off the Radar?”
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When I first started to see the adult with congenital heart disease (undiagnosed, previously diagnosed but not operated, or “repaired”), in the 1960’s at Children’s Hospital in Boston, it was a field that was just beginning. It was triggered by the persistence of problems or the appearance of new ones related either to the disease itself or to the repair (should I call it palliation?). Fortunately, the Peter Bent Brigham (now Brigham and Women’s) hospital was right next door, and we each, in the cardiology departments, spent a fair amount of time exchanging ideas and experiences. Several of us at Children’s had been trained in IM and PD, so the inevitable problems of acquired coronary disease presented less of a problem that did the more difficult problems of dysrhythmias, pulmonary hypertension and vascular obstructive disease, FFO’s with CVA’s, and ventricular and atrial pathologies and failure, never mind the tissue valve replacements. In the late 60’s and 70’s we saw a lot of people who had not been followed after their “repairs” but they returned to the Children’s because that is where the surgery had been done. Two of the more common reasons for the reappearance of such patients were issues related to pregnancy, and difficulties encountered with work and health insurance. There was a concerted effort to take care of these patients, many of whom had not been seen by a cardiologist since they had turned 18 to 21 years of age. One of my joyous memories–among many– was a young adult whose successful repair of an ASD (no PAH or PVO) enabled him to enter and succeed in the Air Force Academy.
One of the main problems with those patients is the difficulty to have precise data about their cardiac anomaly and the type of surgery they underwent; they may consult after a long while and far from their initial site of treatment.
Giving them (or their parents ) their medical records, insisting on the importance of keeping them preciously so as to be able to produce them if need be, would prove most efficient.