Transitioning HIV-Infected Adolescents Into Adult Care

Guideline and Commentary

Jacob Abadi, MD; Michael G. Rosenberg, MD, PhD


August 29, 2011

In This Article

Challenges and Barriers to a Successful Transition

Common barriers have been identified in the literature regarding transition of adolescents with chronic diseases into adult care.[2,3,4,5,6,7,8,9,10,11,12,13,14] Many young patients experience worry and anxiety about transitioning and have a difficult time adjusting to the increased responsibility and expectations in an adult care setting.[15,16,17] Issues specific to HIV-infected youth may make the transition more difficult for this population compared with adolescents with other chronic illnesses (see Appendix A, Challenges to Successful Transitioning ).[18]

Transition to an adult care setting is a challenge for most HIV-infected adolescent patients because of the loss of the stable and long-term nature of their relationships with their pediatric or adolescent healthcare team.[19] HIV-infected adolescents who have lost family members or are estranged from their families may feel that their pediatric or adolescent care providers have become their primary support system. Transitioning to an adult care setting abruptly or without preparation may result in the patient withdrawing from medical care altogether because the adolescent is left feeling "dumped" or abandoned, which may further exacerbate a perception of overall loss.

Appendix A lists common challenges of transition, HIV-specific challenges, and challenges specific to both perinatally and behaviorally infected adolescents.

Preparing for Transition in the Pediatric/Adolescent Care Setting

The pediatric/adolescent care provider should:

  • Develop a transition plan several years prior to transition and update it at regular intervals (AIII)

  • Ensure that HIV-infected youth understand their chronic illness and its management, and provide them with skills to negotiate care in an adult clinic setting (see Table 3) (AIII)

  • Assess patients, in an individualized manner, for development of sufficient skills and understanding for successful transition (AIII)

  • Address the individual barriers for each patient that may be preventing him/her from acquiring skills, such as developmental delays, anxiety, post-traumatic stress disorder, transient living conditions (AIII)

  • Prepare and discuss a current medical history with the patient so that he/she is aware of previous hospitalizations or allergies that may have occurred during infancy or childhood (AIII)

Developing a Transition Plan

Recommendations. The pediatric or adolescent care provider should collaborate with the patient and family to develop a transition plan that spans several years with concrete goals and a timeline. Whenever possible, a written transition plan should be developed at least 3 years before the transition is planned and should be updated at least annually. (AIII)

For adolescents who do not yet know their HIV status, disclosure should be a primary goal of the transition plan. (AIII)

As part of the transition plan, arrangements should be made for transitioning patients to meet their new providers well in advance of their final appointment with their pediatric or adolescent primary care provider. (AIII)

It is recommended that providers plan to take at least 3 years to prepare patients for the transition to an adult practice setting. The transition plan, together with individual goals and achievements, should be reviewed and modified annually. See Appendix B, Sample Policies, Tools & Assessments , for examples of transition instruments.

There are unique clinical considerations that should be considered when developing transition plans for perinatally infected adolescents (see Table 2). Disclosure of HIV status is a prerequisite for transition to adult care. For guidelines on disclosure, see Disclosure of HIV to Perinatally Infected Children and Adolescents .

Table 2. Clinical Considerations In Perinatally Infected vs. Behaviorally Infected Adolescents

Perinatally Infected

  • More likely to be in advanced stages of HIV disease and immunosuppression

  • More likely to have history of OIs with complications

  • ART is more likely to be necessary to control viremia and increase CD4 counts

  • More complicated ART regimens

  • More likely to have multidrug resistant virus and heavy antiretroviral exposure history

  • More complicated non-antiretroviral medications, such as OI prophylaxis and treatment

  • Greater obstacles to achieving functional autonomy due to physical and developmental disabilities/greater dependency on family

  • When pregnant, higher risk of complications due to more advanced disease and higher risk of second-generation HIV transmission due to multiple-drug resistance

  • Suboptimal immune response to immunizations and boosters

Behaviorally Infected

  • More likely to be in earlier stages of HIV disease

  • Fewer OI complications

  • More likely to have higher CD4 counts*

  • When ART is initiated, simpler regimens can be used

  • Less likely to be resistant to antiretroviral drugs

  • Fewer developmental delays than in perinatal group, which may improve treatment adherence

  • More likely to achieve functional autonomy

* See Antiretroviral Therapy: Deciding When to Initiate ART .
ART, antiretroviral therapy; OI, opportunistic infections.

Education and Skills Training for Adolescent Patients

Recommendations. The pediatric or adolescent care provider should offer training and practice in the specific skills that the patient will need in the adult clinic setting and should evaluate the patient's progress toward these goals (see Table 3). (AIII)

The pediatric or adolescent care provider should ensure that HIV-infected youth understand their chronic illness and its management. (AIII)

Patients cannot self-manage a chronic illness when they do not understand what the illness is. They should understand the basic biology of HIV, why their medications and treatments are necessary, and how to prevent transmission. Informed decision-making is the key to mature self-care and is the overall goal for successful transitioning.

Table 3 lists the necessary skills for adolescents to engage successfully in adult care. Acquisition of these skills will help patients develop the ability to manage appointments, identify new symptoms, obtain medication refills, and properly use medical insurance.

Pediatric/adolescent healthcare systems are usually more flexible with adolescent patients regarding clinic policies. For example, pediatric/adolescent clinics will often accommodate patients who arrive late for appointments or who do not have appointments scheduled. However, the pediatric/adolescent care team should plan to implement a more structured appointment system prior to transition to promote skills building and to minimize "culture shock" or feelings of abandonment in the adult program, where policies are generally followed more strictly. Some adolescent programs use peer support groups for skills training and also have skills practice sessions with medical students and residents.

Table 3. Skills to Assist Adolescents In Achieving Successful Transition to an Adult Clinic

Ideally, the adolescent should be able to do the following before transitioning:

  • Know when to seek medical care for symptoms or emergencies

  • Identify symptoms and describe them

  • Make, cancel, and reschedule appointments

  • Arrive to appointments on time

  • Call ahead of time for urgent visits

  • Request prescription refills correctly and allow enough time for refills to be processed before medications run out

  • Negotiate multiple providers and subspecialty visits

  • Understand the importance of health insurance, how to select an appropriate healthcare plan, and how to obtain it and renew it

  • Understand entitlements and know how to access them

  • Establish a good working relationship with a case manager at the pediatric/adolescent site, which will enable the adolescent to work effectively with the case manager at the adult site



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