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Reviewed by Zalman S. Agus, MD; Emeritus Professor, Perelman School of Medicine at the University of Pennsylvania and Dorothy Caputo, MA, BSN, RN, Nurse PlannerWith current antiretroviral therapy, most HIV-infected children now survive into adulthood. Successful transition requires several factors according to a policy statement of the American Academy of Pediatrics.The care transition should include a written policy for the transfer of HIV-infected youth to adult care and the plan should be introduced to the youth in early adolescence and modified as the youth approaches transition.HIV-positive adolescents, who face isolation, ostracization, and confusion as they transition to adulthood, need sensitive and directed guidance to an adult healthcare provider, according to the American Academy of Pediatrics.
Clinicians should follow four steps to guide HIV-positive teens to successfully maintain their healthcare: create a formal, written transition care plan, start communications about HIV status and transition around age 12, make the transition between 18 to 25 years of age, and document and evaluate the transition upon completion, the AAP outlined in a policy statement published online in Pediatrics.
"Pediatricians and adolescent and family medicine providers have a pivotal role in facilitating seamless and effective transition at a very vulnerable and anxious time of life for both HIV-infected youth and their families," wrote Russell B. Van Dyke, MD, FAAP, and Rana Chakraborty, MD, for the AAP's Committee on Pediatric AIDS. "These essential transitional activities can improve health outcomes for HIV-infected adolescents."
HIV infection is the seventh-leading cause of death among youth and adolescents and 12,200 (25.7%) of all new HIV infections in 2010 were in youths. Nearly six out of 10 (59.5%) were unaware of their infection, a higher percentage than in any other age group, the authors wrote.
The written care plan should include supporting documents that assist the new team, according to the policy statement, including goals and a timeline. An important piece of the plan, the authors noted, is a system, such as a registry, to track youth as they make their way through the transition process so as to minimize loss to care that might accompany a move out of the family home.
Introducing the concept of transition is important, the policy stated, because children who are unaware of their status should be fully informed at age 10 to 12, depending on maturity and neurocognitive abilities. Readiness assessment tools may help identify strengths and weaknesses that can focus patient attention.
The teenager's or young adult's educational, vocational, and social service needs should be addressed, as well.
"The plan should emphasize education of all involved parties and empowerment of the HIV-infected youth to assume responsibility for his or her own healthcare," the authors wrote." It is important to encourage independence through personal ownership and management of healthcare. Particular attention should be paid to identifying and addressing behavioral, emotional, and mental health problems."
Helping the patient successfully make the actual transition depends greatly on the team handing off care, the policy stated. Creating and maintaining a portable medical summary and an emergency care plan is essential.
Transition should include direct contact between providers and a letter of transition, the portable medical summary, and electronic health records before the patient transfers to the new provider.
"Ideally, the youth would be introduced to the adult healthcare provider personally by the pediatric, adolescent, or family medicine provider, either in the referring or adult clinic," the AAP authors wrote.
"This support could consist of periodic contact by a member of the referring healthcare team, such as a nurse or social worker. A peer support group may assist youth with dealing with anxiety resulting from the transition process."
However, once adult care is established, the pediatric, adolescent, or family medicine provider should bow out to prevent confusion and reinforce the adult healthcare provider.
"Adolescence is a developmental stage characterized by immature concrete reasoning often manifested by denial of illness, a sense of invulnerability reflected by risk taking, and behaviors that are strongly influenced by peer norms," the authors wrote. "These characteristics all have a direct negative effect on the ability to adhere to complex medical regimens."
Dramatic improvements in HIV care combined with psychosocial stressors including loss of a parent, foster care, poverty, homelessness, unemployment, discrimination, and abuse have made for a generation of HIV-infected youth whose future -- and others -- depends on managing their chronic condition on their own, the policy stated.
Furthermore, among HIV-infected youth 18 and older who transitioned from National Institutes of Health clinical research protocols to adult care, 15% reported not having health insurance.
No conflict of interest statements were published with the policy statement.
Kathleen Struck joined MedPage Today after serving as Managing Editor for EverydayHealth.com, Stars and Stripes and MediaNews Group. She lived and traveled internationally for more than 15 years and has written and edited for publications including, Washington Post, Baltimore Sun, Newsday and Regulatory Affairs Professional Society. At MedPage Today, she reports and edits on general news and information.
By Cole Petrochko, Staff Writer, MedPage Today Reviewed by F. Perry Wilson, MD, MSCE; Instructor of Medicine, Perelman School of Medicine at the University of Pennsylvania and Dorothy Caputo, MA, BSN, RN, Nurse PlannerThis study was published as an abstract and presented at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal.Note that this small pilot study with a before-after design demonstrated that providing teens with asthma with the opportunity for "healthy sleep" improved nocturnal symptoms and subjective measures of executive function.