Preparing the Young Adult With Complex Congenital Cardiac Disease to Transfer From Pediatric to Adult Care

Transfer From Pediatric to Adult Care

Transfer is defined as “An event or series of events through which adolescents and young adults with chronic physical and medical conditions move their care from pediatric to an adult care environment.” A seamless transfer between pediatric and adult settings warrant that age- and developmental-appropriate care is provided, while assuring that patients remain under follow-up. Research, however, has indicated that a substantial number of patients do have gaps in their care. In patients with congenital cardiac disease, care gap rates range from 7% to 76%, with a median proportion of 42%. The consequences of such care gaps may be far-reaching. Studies have reported that patients who presented for medical check-up after a care gap more often had a new diagnosis of hemodynamic significance and had a greater likelihood of needing an urgent surgical catheter-based intervention. Therefore the identification of patients at risk for care gaps and the implementation of interventions that prevent such care gaps are of utmost importance. In this respect, use of mobile phone messaging reminders to reduce missed appointments in outpatient clinics and the implementation of transition programs to make patients and families aware about the need for life-long care may facilitate the transfer from pediatrics to adult care and may avoid care gaps.

Transition

Transition can be seen both as a developmental process and as a healthcare intervention. As a developmental process, transitions are passages from one life phase, physical condition, or social role to another, resulting in a temporary disconnectedness of the normal way of living, which demands an adjustment of the patient and the environment. As a healthcare intervention, transition is defined as “a multifaceted, active process that attends to the medical, psychosocial, and educational/vocational needs of adolescents as they move from the child-focused to the adult-focused healthcare system.” In such an intervention, the adolescents are prepared to take charge of their lives and their health in adulthood. Transition takes time, and is not necessarily completed on entry to adult care. Its duration varies considerably from patient to patient, and is influenced by a number of factors, including the background, development, and intellect of the patient and the level of support provided by the family. The whole process takes several years, and is only successfully achieved when the patient is fully able to take responsibility for their own health and issues of lifestyle. It is important therefore that during the process, young adults with complex congenital cardiac malformations appreciate that although they have the potential to live healthy and productive lives, most will require life-long cardiac surveillance. They also need to understand the requirement to obtain appropriately skilled care. During transition, issues both generic and disease-based need to be addressed. Frequently, the coordinated transfer of care from the pediatric to the adult healthcare environment is the final step in a successful process of transition.

Pediatricians tend to consult predominantly with the parents, whereas adult practitioners seek to develop a partnership with the patient. This involves directing information and education toward the patient and, at the same time, encouraging responsibility and self-reliance. It is critical that during adolescence, this connection with the young patient is successfully achieved so that the patients begin to understand the need for an active role in their own health and cardiac management. If this fails, adolescents and young adults may disappear from medical follow-up and return only when potentially avoidable problems have developed.