Transitioning HIV-infected youth to adult care
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Pediatric and adolescent physicians go to great lengths to care for our communities’ young patients. This particularly rings true for those caring for youth living with HIV, where home life, confidentiality and behavioral health are core aspects of care. However, there is an element missing from this mix that could lead to poor disease outcomes: transition to adult care.
Transition to adult care involves a planned and purposeful movement from the adolescent to the adult medical home. Poor transition readiness correlates with increased levels of anxiety and less success with the transition process. Historically, this process has been wrought with challenges, including the very important risk that patients may not remain engaged in care. Poor outcomes may also include disengagement from medical care, interruptions in ART, development of drug-resistant strains of HIV, and declining immune status. All of these factors may lead to increased morbidity and mortality, and increased likelihood of onward spread of HIV.
Transition to adult care impacts thousands of young people living with HIV and other chronic diseases in the United States. Youth living with complicated diseases are asked to manage their illness, often before they reach adult levels of maturity. Epidemiological trends, along with advancements in HIV diagnostic modalities and treatment, suggest that a growing number of youth will require transition as they age out of HIV pediatric and adolescent care. According to the most recent estimates, about 39,000 youths aged 13 to 24 years are living with HIV in the U.S. Approximately 9,000 new infections occurred in this age group in 2014. Eighty percent of these youth are men who have sex with men (55% black; 23% Latino; 16% white). Youth living with HIV consist of those who were perinatally infected and those who acquired HIV through behaviors such as condomless sex or injection drug use. Perinatally infected youths may require more intensive strategies to ensure successful transition. These youths are more likely to have advanced HIV disease with associated complications, have more complex ART regimens with underlying multidrug resistance and face greater obstacles to achieving functional autonomy.
At Montefiore’s Adolescent AIDS Program, we aim to create transition plans that allow young people to more independently manage their disease and maintain ongoing suppression of the virus. This involves a coordinated effort on the part of the patient, their parents, and the adolescent and adult providers. The transition age can vary from 18 to 25 years in most adolescent HIV practices. Patients may benefit from transitioning at older ages when the psychosocial stage of maturation more closely resembles an adult.
The process of transition may begin when the youth enter care (Table 1). Six months to 1 year prior to the actual transition, the clinical team should focus efforts to ensure patients acquire the skills needed for successful transition. A member of the clinical team (eg, provider, nurse and social worker) should perform a baseline assessment of the patient’s disease management skills and work with the patient to develop a transition plan (Table 2). The plan should address deficiencies in the assessment and identify skills goals on a periodic basis. The clinician should also assess possible barriers to transition (Table 3). When the patient reaches the age of transition, the adolescent medical home should assist with effective linkage to the chosen adult provider, and follow up to ensure linkage has occurred.
Other factors may augment difficulties to a successful transition. Many youths with histories of trauma or loss can form a strong psychosocial attachment to their adolescent medical home. This phenomenon may increase the difficulty of terminating relationships with clinicians and staff and forming new attachments in the adult setting. Additionally, the patient’s first interaction with the adult medical home is critically important. This represents an instance where interruptions in care may occur. Differences in the patient experience, clinical practice and atmosphere may differ in the adult medical home compared with the adolescent medical home. The transition process may augment these differences and deter the youth from subsequently seeking care.
It is important that medical homes are sensitive to race, culture, gender, sexual orientation, the adolescent experience, and the lived experience of the patients they serve. Youth living with HIV are often the victims of poverty, HIV stigma, marginalization, racism and homophobia. Patients may experience repeat psychological insults and re-traumatization when faced with discrimination from the health care system. This may act as a strong deterrent for youth to remain in care. A culturally competent, trauma-informed health care system for youth living with HIV is a public health necessity. It contributes to the elimination of racial and ethnic health disparities, encourages retention in care, reduces the spread of HIV, and helps improve health outcomes.
There are several strategies that can be used to mitigate barriers to transition and support a seamless transition process:
- Individualize the transition plan based on patient needs — Patients may have specific needs that require ongoing attention. These needs may be medical, psychosocial or skills-based. It is also important to identify the clinical settings where the patient would feel most comfortable. Possible settings may include a large HIV specialty clinic vs. a community health center without the focus on HIV. The clinical team should assess patients in an individualized manner to ensure they develop sufficient skills for a successful transition.
- Address comprehensive care needs as part of the transition — Comprehensive care includes the medical and psychosocial aspects of transition. It also may include addressing issues related to poverty, abandonment, disclosure concerns, HIV stigma, homophobia, racism and societal marginalization. It may be helpful to develop behavioral interventions, such as support groups, and mental health consultation to further flesh out these issues. Oftentimes, addressing these issues may require providers to involve the patient’s family and psychosocial supports.
- Begin the transitions process early — It is important that the transition process start at least 1 year before the transition occurs. It allows sufficient time for patient skills building, clarification of expectations and ongoing discussion of issues that may provoke anxiety surrounding the transition.
- Identify adult providers who are willing to care for adolescents — The adult provider should have the interest and skill set to provide effective prevention counseling and guidance. This includes understanding the adolescent stages of maturation and comfort with counseling around behavioral and sexual health practices. These factors are critically important to building therapeutic alliances with youths and helping them make informed decisions about their sexual behaviors. Adult providers may need additional training to successfully manage adolescents and young adults with HIV.
- Effective communication between the adult and adolescent providers — It is important that adolescent providers offer an effective sign-out to adult providers. The sign-out should include a complete medical history and review of ongoing clinical and psychosocial issues to be addressed in the adult medical home.
- Utilize a multidisciplinary team to aid in the ease of transition — The multidisciplinary team may include clinical providers, social workers, nurses, health educators, patient navigators or peers who have already transitioned successfully. A multidisciplinary approach allows the clinical team to develop multifaceted solutions for patients with complex medical and social problems.
- Encourage patients to be their own health care advocate — Patients should have a thorough understanding of their health status. Patients should transition with a basic understanding of HIV transmission and prevention strategies, condom use and principles of medication adherence. They should also know how to make medical appointments, formulate questions regarding their health, request refills, carry their insurance information and manage entitlements. Patients should also take charge of their medical information. They should have a method of documenting their health information (eg, written in a booklet, smartphone apps, online). They should understand medical tests and reports (eg, CD4 and viral load) and receive a written summary of their medical history during the year before transition.
- Utilize patient navigation when needed — Patient navigators can be extremely helpful in facilitating linkage to the adult medical home. They are able to make initial appointments for the adult provider, escort patients to their appointments and support the providers and patients.
- Employ an objective measure to assess transition successes and failures — This may include development of numerical scales to assess readiness or by tracking completed appointments with the adult provider. The transition is not complete until there are at least two documented visits with the adult medical provider.
We are not alone in suggesting that more evidence-based models surrounding transitions are needed. Several professional organizations, including the American Academy of Pediatrics, the Society for Adolescent Health and Medicine and the American Academy of Family Physicians, agree that more evidence-based practice models are needed. Successful transition of the adolescent to adult care is a critical component to successful navigation of their HIV disease. Future studies should identify youth who are lost to follow-up during the transition process and understand their perspectives in order to improve the current transition processes.
- References:
- CDC. HIV Surveillance Report, 2014. Diagnoses of HIV Infection in the United States and Dependent Areas, 2014. http://www.cdc.gov/hiv/pdf/library/reports/surveillance/cdc-hiv-surveillance-report-us.pdf. Accessed September 16, 2016.
- Gilliam PP, et al. J Assoc Nurses AIDS Care. 2011;doi:10.1016/j.jana.2010.04.003.
- Hussen SA, et al. Future Virol. 2015;9:921-929.
- New York State Department of Health AIDS Institute. Transitioning HIV-Infected Adolescents to Adult Care. www.hivguidelines.org. http://www.hivguidelines.org/wp-content/uploads/2012/11/transitioning-hiv-infected-adolescents-into-adult-care-11-06-2012.pdf. Accessed September 16, 2016.
- Wiener LS, et al. Soc Work Health Care. 2007;46:1-19.
- For more information:
- Alisha Liggett, MD, is the associate medical director and HIV prevention specialist at the Adolescent AIDS Program at Montefiore Health System.
Disclosure: Liggett reports no relevant financial disclosures.