MULTIDISCIPLINARY CARE OF ADULTS WITH CONGENITAL HEART DISEASE

In the United States and abroad, increasing numbers of specialized facilities are emerging for the care of adults with congenital heart disease.2,4 Relevant to these facilities are staffing, diagnostic laboratories, criteria for patient entry, referral patterns, outpatient and inpatient management, multidisciplinary consultants, and educational, training, and research commitments.2

Patients are best managed, at least for the foreseeable future, by collaboration between medical and pediatric cardiologists and cardiac surgeons with the assistance of cardiovascular nurse specialists or physician assistants. Cardiac surgeons who have the knowledge and skills needed to deal with congenital heart disease can, as a rule, adapt those skills to coexisting acquired cardiac diseases and obviate the need for two cardiac surgeons to perform one operation. An adult congenital heart disease facility should be a collaborative effort, especially in the setting of a university hospital in which intellectual interchange, teaching, and research are as paramount as optimal patient care. Cardiologists with special expertise in this area are now recognized as part of the profile of cardiovascular specialists.12

Consultative needs should be anticipated rather than solicited as ad hoc opinions. Noncardiac consultants are best incorporated into the adult congenital heart disease facility and include electrophysiologists, hematologists, nephrologists, rheumatologists, transplant cardiologists, pulmonologists, high-risk pregnancy obstetricians, gynecologists, psychiatrists, cardiac anesthesiologists, cardiac pathologists, and social service personnel for insurance and vocational counseling.

Criteria for patient entry into the specialized facilities are based on age and psychological and physical maturity. Adolescents are neither children nor adults, and adolescent medicine, at least at present, is best dealt with by the more knowledgeable pediatricians or by medical cardiologists with pediatric experience. In some centers, adolescent patients remain the province of pediatric cardiologists, whereas in others, adolescents are included within the adult congenital heart disease facility, provided that facility has a pediatric cardiologist on its staff.4

Tertiary centers for congenital heart disease in adults do not compete with practicing physicians or community hospitals but instead offer services that are difficult if not impossible to duplicate. Broadly speaking, the base of the referral pyramid is the primary care physician in the community (general pediatrician, general physician). The next level (stratum) is the cardiologist in the community (pediatric, medical) who provides both consultative and primary care. Tertiary care depends upon regional specialized facilities that have experience even with rare and complex malformations.

There is a mounting consensus that adults with congenital heart disease are best managed in an adult setting, both outpatient and inpatient. Pediatric cardiology clinics tend to reinforce a sense of dependency that patients must overcome if they are to function as mature adults. Inpatient policy depends in part on whether medicine and pediatrics share the same hospital. When that is the case, adults with congenital heart disease are admitted to adult inpatient facilities under the care of the cardiologist with inpatient privileges. Hospitalized adults are an important part of the educational experience of house staff and fellows. Admissions are for cardiac or noncardiac surgery, for labor and delivery, for cardiac intensive care (generally arrhythmias), for heart failure, or for coexisting general medical disorders.

Noninvasive, exercise, catheterization, angiographic, and magnetic resonance imaging (MRI) laboratories must provide the same high quality of care for adults with congenital heart disease as that provided by pediatric laboratories for infants and children. Quality cannot be compromised for expediency.

Medical records serve multiple purposes. The goal should be a quality standard appropriate for the use of records for research purposes. Reports to referring physicians should be both practical and educational. It is useful to have a dual record system, with one set for hospital files and a second for the congenital heart disease facility. When patients move to another area, copies of their records should be carried for delivery to their new cardiologist. Patients have proved to be responsible emissaries.

The educational and training commitments of an adult congenital heart disease facility extend to community physicians, house staff, fellows, medical students, visiting physicians, nurses (especially nurse specialists), and the patients themselves. Tertiary care centers should assume responsibility for informing community physicians that adults with congenital heart disease require special expertise seldom available in local hospitals. That level of awareness is important in channeling patients to tertiary facilities.

Adult congenital heart disease centers, especially in university hospitals, should be committed to research prompted by a desire to address unresolved questions posed by this patient population. A rich harvest is in store if advantage is taken of collaboration with colleagues in other disciplines. A research base must be provided for fellows with career interests in adult congenital heart disease.

Date: 2014-12-21; view: 1002