Health Care Transition for Youth Living with HIV/AIDS

In this position paper, the authors maintain that due to the rate of HIV/AIDS infections in the United States (US), 13% of which occur annually among young people aged 13 to 24 years and an increasing number of perinatally infected youth, there is a need to develop transitional programmes for adolescents with chronic disease to address the many challenges these youth face in the process. Because there is limited data available as to what strategies are most effective in the establishment of "continuous, coordinated, culturally appropriate, compassionate, family-centred transition programs for youth with special health care needs" and few evidence-based models to study, this review discusses the unique transition challenges to consider for this population, including: socioeconomic and health insurance status; the special role of the paediatric or adolescent provider; family, stigma, and disclosure issues; cognitive development and mental health issues; medication adherence; and sexual, reproductive, and gender health concerns.

The review looks at some of the key issues for transition and showcases some early models that have had some success with transitions. Successful strategies appear to include different means of communication as key strategies:

• The Movin' Out transition protocol includes a 5-phase approach beginning at age 23:

1) discussion begins with the identified client at each appointment;
2) the client meets the adult infectious disease physician in an adolescent clinic;
3) check-up with the adult physician in an adolescent clinic;
4) first appointment in the adult clinic accompanied by the adolescent social worker or peer educator; and
5) 1-year follow-up with the client by the adolescent psychosocial team.

Preliminary data from follow-up interviews after at least 2 adult care appointments suggest that early education regarding health care access and site visits to community agencies that offer HIV services may be helpful for youth during the transition process.

• In another model, patients are given the opportunity to visit multiple adult care settings with an adolescent social worker before the age of 24 years and are linked with a specific adult HIV case manager and community mental health provider before transition. The discussion about transition occurs at least yearly from the age of 14 years.

• Another has patients visit an adult provider in the last few years before transition with their youth provider, who then remains in contact with them during the year after transition;

• The National Resource Centre of the AIDS Education and Training Centres has an adolescent transition workbook that may help paediatric and adolescent providers better prepare their clients for transition. Topics addressed in the workbook include improving transition readiness on: health condition, health literacy, medication management, sexual health and family planning, personal social supports and community resources, education and career goals, and legal rights.

Issues that can be considered when designing strategies:

• Communication and/or coordination between (currently) fragmented medical and psychosocial services. This fragmentation is a barrier to transition for patients with cognitive development, mental health, and/or substance abuse problems who come out of the "1-stop shopping" model of paediatric care.
• Communication is a key transition issue: patient-provider discussions around the timing and expectations for transition to adult care, and provider-provider communication about important aspects of the patients´medical histories.
• Early discussion of health care transition helps to prepare the patient for transition.
• Youth expect that providers will communicate clinical histories as well as their HIV medical history, or that their adult caregivers will.
• In the field of sexual, reproductive, and gender health, service provision and education have been reported as key to transition. Informants hypothesised that young women who had been pregnant while receiving care at a paediatric or adolescent care site transitioned more easily, perhaps because they already had experience working with another provider during pregnancy and increased access to insurance and other entitlements because of their childbearing. Adolescent HIV providers who plan on moving their youth clients to adult clinics that are lesbian/gay/bisexual/transgender friendly help to facilitate a more successful transition.
• Paediatric providers are sometimes described as "family," who have been there through critical illnesses and even the death of parents. Providers are sometimes the only ones who know the young person´s diagnosis. It can be as hard for a client to leave such a medical "home" as it is for the provider to let the patient go.

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