Medical advances have changed the future of today's patients with HIV. Most children with HIV grow into adults these days. But that presents challenges, too.
As children grow up, they eventually need to transition into taking responsibility for their own medical care.
This process also requires transitioning from their pediatrician and other pediatric specialists for their condition into care from adult providers.
The American Academy of Pediatrics has published a policy statement with the key components of a successful transition for these children.
The policy statement, written by a committee led by Rana Chakraborty, MD, and Russell B. Van Dyke, MD, outlines what is necessary for children to transition smoothly from their medical care in childhood to medical care in adulthood.
"Transition planning should be a standard part of providing health care for all HIV-infected youth," the researchers wrote.
"A well-planned transition of HIV-infected youth from pediatric, adolescent or family medicine clinics, often from a medical home to adult health care, enables them to optimize their ability to assume adult roles and activities," they wrote.
A medical home is the healthcare team of doctors and specialists together who care for a patient and keep all the patient's records in a centralized place where they can be easily shared.
The researchers provided five major recommendations that are important for ensuring these young patients a successful transition to adult care.
The most important and first recommendation is that all the child's doctors work together to "...develop a formal process for transition of youth to adult health care."
Next, long before a teenager is old enough to actually make the transition, the doctors should talk to the teen and the teen's family several years ahead of time about how the transition will work.
If the child is not already aware that they have HIV and what this means, the doctors and the child's family will need to explain this and make sure the child understands.
The third recommendation outlines the four steps of the actual transition process:
1. The child's primary doctor should write down policies for the process of transitioning care and share those with all the doctors, medical staff, patients and families who will be affected by the transition. Any necessary training should also be provided to staff.
"Written documents, such as brochures and web-based information, can be helpful in implementing the policy," the authors wrote. "Providers should establish a system to identify and track youth as they progress through the transition process."
2. For each patient, the teen and his or her family should develop an individualized transition plan long before the transition begins to take place.
This plan should include what will happen in the event of a medical emergency during and after the transition.
3. The transition should begin with a written letter and then a visit, before care is transferred, with the teen's new doctor.
4. After the transition occurs, the process should be documented and evaluated. The teen's previous doctor should remain available as a resource in the time immediately after the transition.
The final two recommendations made by the committee relate to the teen's healthcare coverage and the overall process.
The committee recommended that the providers and parents regularly make sure the teen's healthcare coverage is not interrupted during the transition. Also, their access to their medications should not be interrupted.
Finally, "...the transition process should ensure that the youth’s healthcare, educational, vocational and social service needs are discussed and addressed," the researchers wrote.
The policy statement was published June 24 in the journal Pediatrics. No external funding was used for the policy statement's creation. No conflicts of interest were listed.