Advances in medical care over the last 50 years and especially since the late 20th century have made it possible for many children with chronic, once-fatal diseases to survive and even flourish into adulthood. While this is a positive development in its own right, it does create a number of challenges as long-term pediatric patients transition into life and care as chronically ill adults.
Independence
One of the most important factors to consider in transitioning from pediatric care to adult care is the patient's natural desire to lead as independent a life as possible. Parents of chronically ill children spend years making the children's health care decisions and building relationships with their pediatric health care providers. As these children become adults, they are entitled to begin making their own health care decisions and finding their own practitioners. In many cases, if their health permits it, they'll also be making the normal transition to independent living in a home of their own or perhaps in an assisted-care facility.
Transition and Chronic Care
The transition from childhood to adulthood is paralleled by a transition from pediatric care to adult medical care. This can be problematic in the case of chronic childhood illnesses, many of which were fatal until recent years. Pediatricians may be intimately familiar with a condition and its care but inexperienced in treating adults. Other physicians may lack a suitable knowledge of chronic long-term illnesses rooted in childhood, because they haven't specialized in pediatrics. Insurance is another concern, because many providers have an age limit on their coverage of chronic childhood illnesses.
Caregivers
The growing number of children surviving chronic diseases has created a need for physicians with these broader skills -- being well-versed in the pediatric diseases themselves but with enough additional training to help patients as they become adults. According to Dr. Richard Antonelli of Children's Hospital Boston, there are approximately 7,000 physicians in the United States whose training in both conventional and pediatric medicine equips them for this emerging specialty of transition medicine. However, approximately 500,000 chronically ill children become adults every year in the United States, so the number of suitably trained practitioners is well below what's needed.
The Role of Hospitals
In the absence of appropriately trained doctors in suitable numbers, many hospitals are stepping up to provide a range of care and support services. Boston's Martha Eliot Health Center, for example, works with Children's Hospital Boston and Brigham and Women's Hospital to fill the gap between pediatric and adult care. On the other coast, UCLA's Medical Center provides a number of support services to children transitioning into adulthood, including referrals to training and employment assistance, insurance providers and instruction in basic self-care techniques for those with physical impairments.
References
- Transition From Pediatric to Adult Care: Internists' Perspectives
- Children's Hospital Boston: Transitioning the Chronically Ill Patient from Pediatric to Adult Care
- Martha Eliot Health Center: Transition Medicine
- UCLA Health System: Transitioning Complex, Chronically Ill Patients From Adolescence to Adulthood
- HRTW National Resource Center: Transitioning From Child to Adult
