As recently as the 1960's, sickle cell disease was considered an issue of childhood care, since relatively few patients survived very far into adulthood. No universal cure for the disorder has been developed. However, improvements in general medical care and the development of palliative treatments have extended life expectancy well into adulthood. The general medical services available through pediatric departments are generally well organized and comprehensive. In contrast, the medical services of most adult hospitals lack comprehensive services for adults with sickle cell disease. Care often becomes fragmented for adults with sickle cell disease.
Adolescents with chronic illnesses need appropriate transition to adult care. Children with cystic fibrosis, thalassemia, congenital heart disease and other genetic disorders face barriers when leaving pediatric care. Appropriate transition of the adolescent from pediatric to an adult system of care is very important. The consequent disruption in continuity of care often produces problems that could have been prevented.
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 medical and psychosocial needs of these young people. Using this information, we can develop specific individual and programmatic interventions. Our key challenge is to avoid having youth and young adults "fall through the cracks" as they move between pediatric and adult care. Organized transition programs can facilitate this process.
For transition resources, visit www.floridatransitionproject.ucf.edu