Transition between Pediatric and Adult Care

As recently as the 1960's, sickle cell disease was considered a issue of childhood care, since relatively few patients survived very far into adulthood. No cure for the disorders has been developed. However, improvements in general medical care and the development of palliative treatments have extended life expectancy well into adulthood for these patients. The general medical services of most adult hospitals lack comprehensive care programs for patients with sickle cell disease. In contrast, the medical services available through pediatric departments are generally much better organized. As a result, patients frequently continue in pediatric clinics far into adulthood. Often, adults experience problems, such as hypertension or pregnancy, that are better managed by internists who encounter them regularly. Without an infrastructure to handle their sickle cell disease, patients are naturally reluctant to transfer their care to internists.

Even when an infrastructure exists, in general no orderly procedure exists to transfer care of these patients between comprehensive pediatric programs and their counterparts on the adult services. The consequent disruption in continuity of care often produces problems that could have been prevented. For instance, young adults with sickle cell disease sometimes present with overwhelming pneumococcal sepsis because they had their last immunization by their pediatrician, but failed to connect with an adult provider.

Sickle cell disease is a chronic, and often debilitating disorder. The physical and psychological consequences of chronic illness that begins in childhood often interfere with normal adult functioning. This issue is faced by patients with other chronic illnesses of childhood that extend into the adult years, such as congenital heart disease. A smooth transition process requires a close interface between pediatric and adult providers. Patient trust in adult providers to a large degree depends on a vote of confidence in those physicians by the pediatricians. A good working relationship is the best way to create such confidence. Further, the issue of adult care must be developed slowly for both patient and family. Abrupt transfers are likely to work poorly. The seeds of the concept that the patient will become an adult and will need new providers should be laid early, beginning even as early as 12 years of age.

Our foremost goal as health care providers must be to keep patients in the medical care system. Only then can we execute our second goal, the delivery of true preventative care to patients with sickle cell disease. In this process we must develop programs to assess the psychosocial needs of these young people. Using this information, we can develop specific individual and programmatic interventions. Our key challenge is to avoid having patients "fall through the cracks" as they move between pediatric and adult care. Organized transition programs can facilitate this process.

Transitioning Care