As HIV-infected adolescents grow into adulthood, it becomes necessary for them to transfer to adult care settings and take responsibility for their own health and disease management. Transition in this setting can be defined as “a multifaceted, active process that attends to the medical, psychosocial, and academic or vocational needs of adolescents as they move from the child- to the adult-focused healthcare system. Health care transition should also facilitate transition in other areas of life as well (e.g., work, community, and school)” .
Adolescents and young adults are an increasing proportion of the HIV-infected population. In 2008, 17.6% of new HIV cases in New York State were in the 13- to 24-year-old age group. In addition, more perinatally infected patients have entered this age group. The HIV-infected adolescent population comprises a mixed group of 1) perinatally infected adolescents who are now surviving into adulthood, and 2) behaviorally infected adolescents, most of whom were infected sexually. Despite sharing some common characteristics, these two populations are quite distinct with respect to their needs and challenges.
The American Academy of Pediatrics defines adolescence as 13 to 21 years of age. The recommendations in this chapter pertain to both adolescents and young adults because many pediatric and adolescent clinicians follow HIV-infected patients from 13 to 24 years of age.
Purpose of this guideline: This guideline has been developed to assist providers with the transition process to ensure that HIV-infected young adults are successfully and seamlessly integrated into an adult care setting. Recommendations are meant to serve as a guide and will need to be tailored to the individual patient.
General principles: The cornerstones of effective transitioning that are addressed in this guideline are listed below.
- Individualize the approach used
- Identify adult care providers who are willing to care for adolescents and young adults
- Begin the transition process early and ensure communication between the pediatric/adolescent and adult care providers prior to and during transition
- Develop and follow an individualized transition plan for the patient in the pediatric/adolescent clinic; develop and follow an orientation plan in the adult clinic. Plans should be flexible to meet the adolescent’s needs
- Use a multidisciplinary transition team, which may include peers who are in the process of transitioning or who have transitioned successfully
- Address comprehensive care needs as part of transition, including medical, psychosocial, and financial aspects of transitioning
- Allow adolescents to express their opinions
- Educate HIV care teams and staff about transitioning
Challenges and Barriers
Common barriers have been identified in the literature regarding transition of adolescents with chronic diseases into adult care [2-14]. 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 [15-17]. Issues specific to HIV-infected youth may make the transition more difficult for this population compared with adolescents with other chronic illnesses .
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 . 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: Challenges to Successful Transitioning, lists common challenges of transition, HIV-specific challenges, and challenges specific to both perinatally and behaviorally infected adolescents.
- Reiss J, Gibson R. Health care transition: Destinations unknown. Pediatrics 2002;110:1307-1314. [PubMed]
- Bolton-Maggs PH. Transition of care from paediatric to adult services in haematology. Arch Dis Child 2007;92:797-801. [PubMed]
- Soanes C, Timmons S. Improving transition: A qualitative study examining the attitudes of young people with chronic illness transferring to adult care.J Child Health Care 2004;8:102-112. [PubMed]
- Weissberg-Benchell J, Wolpert H, Anderson BJ. Transitioning from pediatric to adult care: A new approach to the post-adolescent young person with type 1 diabetes. Diabetes Care 2007;30:2441-2446. [PubMed]
- Scal P. Transition for youth with chronic conditions: Primary care physicians’ approaches. Pediatrics 2002;110:1315-1321. [PubMed]
- Higgins SS, Tong E. Transitioning adolescents with congenital heart disease into adult health care. Prog Cardiovasc Nurs 2003;18:93-98. [PubMed]
- Beresford B. On the road to nowhere? Young disabled people and transition. Child Care Health Dev 2004;30:581-587. [PubMed]
- Hewer SC, Tyrrell J. Cystic fibrosis and the transition to adult health services. Arch Dis Child 2008;93:817-821. [PubMed]
- Flume PA, Taylor LA, Anderson DL, et al. Transition programs in cystic fibrosis centers: Perceptions of team members. Pediatr Pulmonol 2004;37:4-7. [PubMed]
- Hink H, Schellhase D. Transitioning families to adult cystic fibrosis care. J Spec Pediatr Nurs 2006;11:260-263. [PubMed]
- Wallis C. Transition of care in children with chronic disease. BMJ 2007;334:1231-1232. [PubMed]
- Pacaud D, Yale J-F, Stephure D, et al. Problems in transition from pediatric care to adult care for individuals with diabetes. Can J Diabetes2005;29:13-18.
- Cameron JS. The continued care of children with renal disease into adult life. Pediatr Nephrol 2001;16:680-685. [PubMed]
- Chira P, Sandborg C. Adolescent rheumatology transitional care: Steps to bringing health policy into practice. Rheumatology 2004;43:687-689. [PubMed]
- Miles K, Edwards S, Clapson M. Transition from pediatric to adult services: Experiences of HIV-positive adolescents. AIDS Care 2004;16:305-314. [PubMed]
- Wiener LS, Zobel M, Battles H, et al. Transition from a pediatric HIV intramural clinical research program to adolescent and adult community-based care services: Assessing transition readiness. Soc Work Health Care 2007;46:1-19. [PubMed]
- Valenzuela JM, Buchanan CL, Radcliffe J, et al. Transition to adult services among behaviorally infected adolescents with HIV: A qualitative study. J Pediatr Psychol 2011;36:134-140. [PubMed]
- Cervia JS. Transitioning HIV-infected children to adult care. J Pediatr 2007;150:E1. [PubMed]
- Catallozzi M, Futterman DC. HIV in adolescents. Curr Infect Dis Rep 2005;7:401-405. [PubMed]
Introduction: Appendix: Challenges to Successful Transitioning
Common challenges in transitioning adolescents with chronic illnesses:
- Identifying adult care providers who are willing and/or versed in transitional care
- Difficulty for pediatric or adolescent care team in separating from long-term patients who may think of their healthcare team as surrogate family 
- Adolescent and/or family resistance to change 
- Radical differences in expectations and clinic cultures between pediatric/adolescent and adult care settings
- Communication difficulties between adolescents and adult care providers
- Inadequate time and resources in adult medicine practice settings for young patients who may require extensive psychosocial support
- Insurance lapses and non-reimbursable duplication of services during the change
- Adolescents may not know what services are available or how to navigate the adult healthcare delivery system
HIV-specific challenges (applicable to both perinatally and behaviorally infected adolescents):
- Stigma of being infected with HIV and, for many HIV-infected youth, the additional stigma of being gay, transgender, a substance user, or a teenage mother
- Increased need for mental health, substance use, and psychosocial services in the HIV-infected population and the complexity of transitioning such services simultaneously
- High rates of teen pregnancy
- Non-disclosure to partners or roommates with whom they are living
- Experience of multiple losses for many HIV-infected youth
- Limited social support
- Fear of seeing sick patients in adult clinic and the reminder of the illness they share or not identifying with the older patients they may see in the adult clinic
- Lack of HIV providers with expertise to treat this population in rural areas
Challenges specific to perinatally-infected adolescents:
- Non-disclosure by parent or guardian – some patients may not have been told that they are HIV-infected
- Loss of emotional support and sense of belonging–many perinatally infected adolescents have been lifelong patients in one clinical setting; for patients who have lost parents and other family members or friends, transitioning may mirror earlier losses and bereavement experiences
- Obstacles in achievement of milestones that are necessary for obtaining and maintaining employment (e.g., long-standing cognitive delays, excessive absences from school, lack of role models, perception during their formative years that HIV would prevent them from living to adulthood, physical stigma, such as short stature, lipodystrophy, encephalopathy)
- More complex clinical issues than behaviorally infected adolescents
Challenges specific to behaviorally-infected adolescents:
- Non-disclosure to primary caregiver – one study found that one-third of youth do not disclose their HIV status to their mother or mother figure 
- High rates of homelessness and incarceration 
- Vijayan T, Benin AL, Wagner K, et al. We never thought this would happen: Transitioning care of adolescents with perinatally acquired HIV infection from pediatrics to internal medicine. AIDS Care 2009;21:1222-1229.
- Stanford PD, Monte DA, Briggs FM, et al. Recruitment and retention of adolescent participants in HIV research: Findings from the REACH Project. J Adolesc Health 2003;32:192-203.
- Wilson CM, Houser J, Partlow C, et al. The REACH (Reaching for Excellence in Adolescent Care and Health) project: Study, design, methods, and population profile. J Adolesc Health 2001;29:8-18.
Transition Preparation in the Pediatric/Adolescent Care Setting
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.
The following resources contain examples of transition tools for individual facilities to develop for their own use. Click the link to download a sample in PDF.
*Sample forms 1–3 adapted, with permission, from Jacob S, Jearld S. Transitioning Your HIV+ Youth to Healthy Adulthood: A Guide for Health Care Providers. Children’s Hope Foundation, Partnership for Family Health, and Bellevue Hospital Center, New York City Health and Hospitals Corporation. April 2007.
There are unique clinical considerations that should be considered when developing transition plans for perinatally infected adolescents (see below). 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.
Clinical considerations in perinatally infected adolescents:
- More likely to be in advanced stages of HIV disease and immunosuppression
- More likely to have history of opportunistic infections (OIs) with complications
- Antiretroviral therapy (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
Clinical considerations in behaviorally infected adolescents:
- 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
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.
The necessary skills for adolescents to engage successfully in adult care are listed below. 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.
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
Identifying the Adult Care Provider
Internists and infectious disease specialists who provide adult care generally are not experienced with pediatric and adolescent developmental issues or may be averse to dealing with the behavioral issues and multiple losses that many HIV-infected adolescents face. Locating a family or hospital-based medical practice that has experience with younger patients or is willing to develop appropriate skills and knowledge may help maintain transitioning patients in care. Adult care providers who are accepting care of HIV-infected youth for the first time should work with adolescent or pediatric providers who are experienced with transitioning when developing the transition plan.
When possible, the pediatric/adolescent healthcare team should assist the adolescent in choosing an adult clinic that best suits the individual. For example, patients with comorbidities, such as hepatitis C virus co-infection, diabetes, or mental health disorders, need to be in a setting that can provide comprehensive care. Some adolescents may feel that location is the most important factor due to time and transportation restrictions. Lesbian, gay, bisexual, and transgender (LGBT) youth may be looking for an environment that is “gay-friendly.”
In some pediatric/adolescent settings, it may be possible to include a family practitioner or an adult provider who divides his/her time between the adolescent and adult clinic. The adult provider then becomes a familiar member of the multidisciplinary team prior to transition.
Importance of a multidisciplinary approach: Many HIV-infected adolescents and young adults need access to complex mental health, alcohol and substance use, and psychosocial services. Unusually high rates of mental health diagnoses have been observed in both perinatally and behaviorally infected adolescent clinic cohorts [1-6].
The primary care provider and members of the multidisciplinary team also should be able to provide ongoing HIV transmission and risk-reduction counseling to adolescents . Ideally, an adult care provider who does not work with a multidisciplinary team should have access to necessary supportive services onsite or nearby. If patients need to be referred to other facilities for services, the primary care team should be responsible for maintaining an ongoing plan for coordination of care among all service providers. All providers involved in the patient’s care are then aware of care plans from other providers, and staff can then follow up with patients when appointments are missed.
|When care is complex or fragmented, assignment of a specific staff person, such as a nurse, case manager, or social worker, to a coordinating role is important to ensure that a comprehensive and effective management plan is implemented that includes optimal support and follow-up.|
Onsite gynecological services, provided by either the primary care provider, a nurse practitioner, gynecologist, or nurse midwife with HIV expertise, is the best model to ensure adherence to gynecologic care. If the patient is referred to a general gynecologic service, the primary care provider needs to ensure that topics specific to HIV care, such as drug interactions between antiretroviral agents and hormonal contraceptives and “dual protection” education (consistent use of a reliable contraceptive method in addition to condoms used to prevent HIV transmission) are addressed (see Care of Female Adolescents with HIV-Infection and Contraception for HIV-Infected Women).
- Mellins CA, Brackis-Cott E, Dolezal C, et al. Psychiatric disorders in youth with perinatally acquired human immunodeficiency virus infection.Pediatr Infect Dis J 2006;25:432-437. [PubMed]
- Mellins CA. Brackis-Cott E, Leu CS, et al. Rates and types of psychiatric disorders in perinatally human immunodeficiency virus-infected youth and seroreverters. J Child Psychol Psychiatry 2009;50:1131-1138. [PubMed]
- Murphy DA, Moscicki AB, Vermund SH, et al. Psychological distress among HIV(+) adolescents in the REACH study: Effects of life stress, social support, and coping. The Adolescent Medicine HIV/AIDS Research Network. J Adolesc Health 2000;27:391-398. [PubMed]
- Radcliffe J, Fleischer CL, Hawkins LA, et al. Posttraumatic stress and trauma history in adolescents and young adults with HIV. AIDS Patient Care STDs 2007;21:501-508. [PubMed]
- Gaughan DM, Hughes MD, Oleske JM, et al. Psychiatric hospitalizations among children and youths with human immunodeficiency virus infection.Pediatrics 2004;113:e544-e551. [PubMed]
- Scharko AM. DSM psychiatric disorders in the context of pediatric HIV/AIDS. AIDS Care 2006;18:441-445. [PubMed]
- Fisher JD, Fisher WA, Cornman DH, et al. Clinician-delivered intervention during routine clinical care reduces unprotected sexual behavior among HIV-infected patients. J Acquir Immune Defic Syndr 2006;41:44-52. [PubMed]
Preparing for Transitioning Patients to the Adult Care Setting
The adult provider or multidisciplinary team should have a plan in place to orient newly transitioning adolescents or young adults to the adult clinical care program. The clinic and/or the provider’s expectations of the newly transitioned patient should be explained during or before the first visit. The policy for late arrivals and walk-ins should be clearly explained to the adolescent.
Implementing the Transition Plan
Most HIV-infected adolescents transition to adult care between 22 and 24 years of age . However, developmental stage and readiness for transition may be better indicators than chronological age for determining when transition should occur. Patients with developmental delays or a chaotic and unstable life may need more time to become ready to transition. Adolescents who demonstrate independence in making their own decisions and show responsibility for their own care may be ready sooner.
The likelihood for successful transition is increased when both the pediatric/adolescent healthcare team and adult healthcare team recognize the broad spectrum of readiness in transitioning patients, ranging from those who are near full autonomy to those for whom disorder and confusion are a daily experience. For example, the transition process for a college student with well-developed career goals will be vastly different than that for a patient who is often hospitalized, nonadherent with medications, and frequently in crisis both emotionally and behaviorally. The goals and challenges of transition, as well as the support that will be needed during the process, will be individualized for each patient.
Although the adult medical model does not generally provide time for direct communication between referring and receiving providers or provider teams, coordination between these providers can moderate the “culture shock” for a patient moving from child-, adolescent-, or family-centered care to adult-centered care. Adolescent medicine experts underscore that, for effective transitioning, a written summary is necessary but not sufficient. Direct communication between providers is essential. When the pediatric or adolescent care team is informed about the orientation plan in the adult clinic, it allows them to provide the transitioning patient with realistic expectations and helps them to prepare the patient with the necessary skills for managing his/her care in the new setting.
The adolescent care provider or team should designate one care provider to oversee transition planning and implementation. This may be the primary care provider or another team member, such as a social worker. The coordinator should have equal visibility in and access to the pediatric and adult clinics to demonstrate continuity to the patient.
In some programs, a peer advocate, who may be someone who has recently transitioned successfully, works with the patient to create and track progress on an individualized transition plan. Peer advocates may accompany patients to the initial adult medical appointments and then provide support while they gain the independence and confidence to attend subsequent appointments by themselves [2,3].
The adult care provider should designate a point person who the patient can call with any questions or concerns. The point person can guide the patient to appropriate services and also alert providers if there are any concerns. This may be someone different than the designated contact person for clinic patients. For example, it might be a social worker or counselor who is familiar with developmental issues for transitioning adolescents and young adults. A primary care provider may choose to be called directly, or there may be a particular nurse or other staff member who is especially adept at working with young patients.
Challenges for Pregnant Adolescents During Transition
Adolescent pregnancy is often unplanned and can interrupt the process of transition planning and skills training. As a result, the patient may be referred to an obstetrics clinic before she is ready and well-prepared for adult care. This is a time when active support is particularly important to ensure that a patient’s discomfort with receiving treatment from a new provider and clinic do not lead to interruption of either prenatal or HIV care. For recommendations regarding care for HIV infected pregnant adolescents, see Care of the Female Adolescent with HIV Infection.
- Gilliam PP, Ellen JM, Leonard L, et al. Transition of adolescents with HIV to adult care: Characteristics and current practices of the Adolescent Trials Network for HIV/AIDS Interventions. J Assoc Nurses AIDS Care 2010; June [ePub ahead of print]. [PubMed]
- HRSA Care ACTION. Transitioning from Adolescent to Adult Care. June 2007. Available at: ftp://ftp.hrsa.gov/hab/
- Maturo D, Powell A, Major-Wilson H, et al. Development of a protocol for transitioning adolescents with HIV infection to adult care. J Pediatr Health Care 2011;25:16-23. [PubMed]
Role of the Adult Care Provider During Transition
Adult care providers and clinic staff need to be prepared for individual differences in maturity and ability to cope. Some of their young patients will initially require far more support and psychosocial intervention than is customary in adult care settings if they are to transition successfully. Others will have already learned the skills needed to negotiate the healthcare system, appointments, and prescriptions and are eager to become self-sufficient adults. These patients likely only need to be educated about what is expected of them as patients in the new adult care setting.
The adult medical model does not generally allow for the extra time that may be needed for patients who are still learning how to speak for themselves and make mature decisions. The adult care provider and healthcare team should strive to devise ways to provide adequate time for the patient during the transition adjustment period.
Clinicians should strive to have a nonjudgmental approach to patient communication, especially when discussing sexual behaviors. Adolescents/young adults often tend to disengage from care if they feel that they have been spoken to in a judgmental manner.
Adult programs generally have more policies than pediatric and adolescent clinics. Policies for late arrivals and walk-ins should be clearly explained to the adolescent; however, to the extent possible, adult programs should also attempt to be flexible to accommodate the frequently less predictable schedules of adolescents/young adults.
Many adolescents and young adults transitioning to adult clinics will not have much experience in practicing the healthcare behaviors that often develop with maturity. The adult care provider should be alert to signs that a young patient needs additional support or skills training. Offering immediate support will reduce the risk of the patient withdrawing from care. Any one of the following behaviors may alert the clinician that the patient requires additional support and indicates a need to revise the individual’s transition plan:
- Multiple missed appointments
- Discontinuation of medications
- Substance use or other behaviors suggestive of poor adjustment
- Loss of entitlements
- Unstable housing
Checklist for successful transition: The checklist below can be used to evaluate the success of the transition.
- The patient has accepted his or her chronic illness and is oriented toward future goals and hopes, including long-term survival.
- The patient has learned the skills needed to negotiate appointments and multiple providers in an adult practice setting.
- The patient has achieved personal and medical independence and is able to assume responsibility for his or her treatment and participate in decision-making.
- The referring provider is familiar with the new provider and practice setting, and direct communication about an individualized plan for the patient has taken place.
- Mental health services have been transitioned at the same time as medical services.
- Psychosocial needs are met and entitlements are in place (housing, health insurance, home care, transportation).
- Life skills have been addressed (e.g., educational goals, job training, parenting).
- The patient receives uninterrupted comprehensive medical care.
After transitioning to an adult care setting, patients may continue to have contact with their pediatric/adolescent care team providers, which may reinforce a successful transition or may uncover potential pitfalls in maintaining ongoing care at the adult facility. Therefore, continued communication between adult and pediatric providers remains a crucial aspect of the transition process.
Both the patient’s and the pediatric/adolescent care provider’s desire to “check in” at the beginning of the transition process is part of normal and healthy closure and can mitigate the patient’s sense of loss. However, transitioning patients may continue to rely on their pediatric/adolescent care provider for emotional support. This provider should defer clinical management decisions to the new provider and should be alert to the risk of hindering the patient from establishing a trusting therapeutic relationship with his/her adult care provider.
Young patients who withdraw from care in an adult clinic will often return to their adolescent or pediatric provider. When this happens, the provider should be prepared to help the patient identify services that can provide increased support and should encourage re-engagement in adult medical care.
|ALL RECOMMENDATIONS: TRANSITIONING HIV-INFECTED ADOLESCENTS INTO ADULT CARE|
Preparing for Transition in the Pediatric/Adolescent Care Setting
Identifying the Adult Care Provider
Preparing for Transitioning Patients to the Adult Care Setting
Implementing the Transition Plan
Role of the Adult Care Provider During Transition