Posted June 2011

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I. INTRODUCTION

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).”¹

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. For guidelines that focus on the comprehensive care of HIV-infected adolescents, refer to Ambulatory Care of HIV-Infected Adolescents.

These guidelines have 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.

Table 1 lists the cornerstones of effective transitioning that are addressed in this chapter.

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II. 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.^2-14 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 (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, Challenges to Successful Transitioning, lists common challenges of transition, HIV-specific challenges, and challenges specific to both perinatally and behaviorally infected adolescents.

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III. PREPARING FOR TRANSITION IN THE PEDIATRIC/ADOLESCENT CARE SETTING

RECOMMENDATIONS:

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)

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A. 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.

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B. 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.

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IV. IDENTIFYING THE ADULT CARE PROVIDER

RECOMMENDATION:

The referring provider should identify an adult care provider or multidisciplinary team that:

• Is experienced with caring for transitioning HIV-infected adolescents and young adults (AIII)
• Is willing to engage in direct communication with the referring provider about the patient (AIII)
• Accepts the patient’s health insurance (AIII)

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.

The Importance of Using a Multidisciplinary Approach

RECOMMENDATIONS:

HIV care should be provided in settings where patients can receive all services in one location from a multidisciplinary team. If a multidisciplinary team is not available, mental health and psychosocial support services should be available onsite or in an easily accessible location. The primary care team should be responsible for maintaining an ongoing plan for coordination of care among all service providers. (AIII)

In areas where comprehensive HIV services are not available, the patient should be referred to a primary care provider with experience in providing HIV care in addition to a provider experienced with ART management. The primary care provider should help the transitioning patient navigate the adult subspecialty clinic model. (AIII)

If gynecologic services are not available as part of a comprehensive care model in the adult HIV care program, the primary care provider should refer HIV-infected adolescents/young women to a gynecologist with expertise in counseling adolescents regarding reproductive health and perinatal transmission. (AIII)

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. (AI)

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.^20-25

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.²⁶ 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.

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 for the HIV-Infected Female Adolescent and Contraception for HIV-Infected Women).

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V. PREPARING FOR TRANSITIONING PATIENTS IN THE ADULT CARE SETTING

RECOMMENDATIONS:

The adult care provider should:

• Become knowledgeable regarding the challenges of transition for older adolescents and young adults to an adult care setting (AIII)
• Prior to transition, learn from the referring provider the particular challenges and goals for the patient; consider how to continue building the adolescent’s skills (AIII)
• Meet the patient, with or without family members, before the change in care (AIII)
• Assign one clinic staff member as point person and have his/her contact information available, including hours when contact is possible (see Section VI. C. Use of Transition Agent or Patient Advocate) (AIII)
• Have an orientation plan in place to acquaint the newly transitioned patient to the new clinic environment (AIII)

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.

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VI. IMPLEMENTING THE TRANSITION PLAN

RECOMMENDATION:

The referring clinician or provider team should arrange the transitioning of all current and anticipated services, including medical, mental health, and substance use treatment if needed. Individualized psychosocial needs, such as housing, employment, education, insurance, home-based services, or transportation, should also be addressed at this time. (AIII)

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A. When to Transition

RECOMMENDATION:

The transition plan should be implemented when the patient:

• Demonstrates understanding of his/her disease and its management (AIII)
• Demonstrates the ability to make and keep appointments (AIII)
• Knows when to seek medical care for symptoms or emergencies (AIII)

Whenever possible, transition should be implemented when the patient’s disease is clinically stable. (BIII)

Most HIV-infected adolescents transition to adult care between 22 and 24 years of age.²⁷ 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.

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B. Communication Between the Adolescent Care Provider and the Adult Care Provider

RECOMMENDATIONS:

The referring clinician should:

• Compose a medical summary that highlights key issues for the individual patient and includes the patient’s medical, psychological, and social history (AIII)
• Schedule a case conference prior to transition (AIII)

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.

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C. Use of Transition Agent or Patient Advocate

RECOMMENDATIONS:

The adolescent care provider should designate one member of the healthcare team to oversee transition planning and implementation at both the old and new provider locations. (AIII)

The adult care provider should also designate a point person who will oversee the transition and who the patient can contact with any questions or concerns. (AIII)

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.^28,29

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.

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D. Challenges for Pregnant Adolescents During Transition

RECOMMENDATIONS:

Adolescent care providers should have referral agreements with obstetrical services that can provide prenatal care to HIV-infected females during transition and that offer prenatal support services. (AIII)

Pediatric and/or adolescent care providers should be able to provide individualized support and advocacy for pregnant teens who are unprepared for transition to obstetrical services. (AIII)

Adolescent care providers should consider remaining the primary care provider for the adolescent during pregnancy. (AIII)

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 for the HIV-Infected Female Adolescent.

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VII. ROLE OF THE ADULT CARE PROVIDER DURING THE TRANSITION PERIOD

RECOMMENDATIONS:

The adult care provider or multidisciplinary team should:

• Assign an appropriate clinic staff person to be the primary contact person for newly transitioned adolescents and
  young adult patients (AIII)
• Have a plan for identifying and managing problems that could interfere with continuity of care (BIII)

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.

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VIII. EVALUATION AFTER TRANSITION HAS OCCURRED

A. Post-Transition Assessment by the Adult Care Provider or Team

RECOMMENDATION:

The adult care provider or team should devise a plan to achieve the following on an ongoing basis:

• Assessment of whether an individual patient is adequately caring for his/her own health (AIII)
• Assessment of barriers that the patient is facing, what support is needed, and who will provide this support (AIII)
• Skills training and support, either through the multidisciplinary team in the clinic or by liaison with a mental health or psychosocial support provider (AIII)

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

The checklist in Table 4 can be used to evaluate the success of the transition.

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B. Follow-up From Adolescent or Pediatric Care Provider

RECOMMENDATION:

If adolescents withdraw from care in the adult clinic and return to their previous pediatric/adolescent clinic, the adolescent care provider should be prepared to help the patient identify services that can provide increased support and should encourage re-engagement in adult medical care. (AIII)

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.

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IX. ONLINE RESOURCES

• Adolescent Health Transition Project website: Information on transitioning for teens, families, and healthcare providers and educators. Available at: http://depts.washington.edu/healthtr
• Adolescents Living With HIV (ALHIV) toolkit. Available at: http://www.k4health.org/toolkits/alhiv
• AIDS Alliance for Children, Teens, and Families. Transitions in Health Care: A Guide for Teens with HIV/AIDS and Their Families. Available at: http://www.aids-alliance.org/resources/publications/transitionshealthcare.pdf
• AIDS Training and Education Centers National Resource Center. Practitioner Transition Checklist and Timeline. Available at: http://www.aids-ed.org/aidsetc?page=et-adol-checklist
• Birnbaum JM. Transitional Care for HIV and AIDS from Adolescence to Adulthood. Slide presentation. Available at: http://www.hivguidelines.org/Admin/Files/ce/slide-presentations/trans-care.ppt
• Casey Life Skills website: Provides tools and teaching resources for young people to prepare for adulthood. Available at: http://caseylifeskills.org
• Healthy & Ready to Work National Resource Center – Tools and checklists
• Assessment Tools: http://www.hrtw.org/tools/check_assessment.html
• Provider Checklist: http://www.hrtw.org/tools/check_provider.html
• Care Plans—forms and transition summaries: http://www.hrtw.org/tools/check_care.html
• HIV Clinical Resource website provides clinical guidelines on the care of adolescents with HIV infection. Available at: http://www.hivguidelines.org/clinical-guidelines/adolescents
• Disclosure of HIV to Perinatally Infected Children and Adolescents
• Ambulatory Care of HIV-Infected Adolescents
• Care for the HIV-Infected Female Adolescent
• Substance Use and Dependence Among HIV-Infected Adolescents and Young Adults
• HRSA Care ACTION. Transitioning from Adolescent to Adult Care. June 2007. Available at: ftp://ftp.hrsa.gov/hab/june2007.pdf
• Kentucky Commission for Children with Special Health Care Needs. Transition Developmental Checklist. Available at: http://chfs.ky.gov/nr/rdonlyres/8c5eedbe-14fc-4488-8c85-1bac1ede0516/0/checklist.pdf
• Partnership for Family Health. Positive Transition to Adult Health Care. Available at: http://www.pffh.org/specialinitiatives/ch_postran.pdf
• Royal College of Nursing. Adolescent Transition Care: Guidance for Nursing Staff. July 2004. Available at: http://www.rcn.org.uk/publications/pdf/adolescenttransitioncare.pdf

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REFERENCES

1. Reiss J, Gibson R. Health care transition: Destinations unknown. Pediatrics 2002;110:1307-1314. [PubMed]

2. Bolton-Maggs PH. Transition of care from paediatric to adult services in haematology. Arch Dis Child 2007;92:797-801. [PubMed]

3. 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]

4. 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]

5. Scal P. Transition for youth with chronic conditions: Primary care physicians’ approaches. Pediatrics 2002;110:1315-1321. [PubMed]

6. Higgins SS, Tong E. Transitioning adolescents with congenital heart disease into adult health care. Prog Cardiovasc Nurs 2003;18:93-98. [PubMed]

7. Beresford B. On the road to nowhere? Young disabled people and transition. Child Care Health Dev 2004;30:581-587. [PubMed]

8. Hewer SC, Tyrrell J. Cystic fibrosis and the transition to adult health services. Arch Dis Child 2008;93:817-821. [PubMed]

9. 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]

10. Hink H, Schellhase D. Transitioning families to adult cystic fibrosis care. J Spec Pediatr Nurs 2006;11:260-263. [PubMed]

11. Wallis C. Transition of care in children with chronic disease. BMJ 2007;334:1231-1232. [PubMed]

12. Pacaud D, Yale J-F, Stephure D, et al. Problems in transition from pediatric care to adult care for individuals with diabetes. Can J Diabetes 2005;29:13-18.

13. Cameron JS. The continued care of children with renal disease into adult life. Pediatr Nephrol 2001;16:680-685. [PubMed]

14. Chira P, Sandborg C. Adolescent rheumatology transitional care: Steps to bringing health policy into practice. Rheumatology 2004;43:687-689. [PubMed]

15. Miles K, Edwards S, Clapson M. Transition from pediatric to adult services: Experiences of HIV-positive adolescents. AIDS Care 2004;16:305-314. [PubMed]

16. 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]

17. 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]

18. Cervia JS. Transitioning HIV-infected children to adult care. J Pediatr 2007;150:E1. [PubMed]

19. Catallozzi M, Futterman DC. HIV in adolescents. Curr Infect Dis Rep 2005;7:401-405. [PubMed]

20. 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]

21. 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]

22. 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]

23. 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]

24. 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]

25. Scharko AM. DSM psychiatric disorders in the context of pediatric HIV/AIDS. AIDS Care 2006;18:441-445. [PubMed]

26. 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]

27. 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]

28. HRSA Care ACTION. Transitioning from Adolescent to Adult Care. June 2007. Available at: ftp://ftp.hrsa.gov/hab/june2007.pdf

29. 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]

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FURTHER READING

American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002;110:1304-1306. [PubMed]

Bennett DL, Towns SJ, Steinbeck KS. Smoothing the transition to adult care. Med J Aust 2005;182:373-374. [PubMed]

Freed GL, Hudson EJ. Transitioning children with chronic diseases to adult care: Current knowledge, practices, and directions. J Pediatr2006;148:824-827. [PubMed]

Hagood JS, Lenker CV, Thrasher S. A course on the transition to adult care of patients with childhood-onset chronic illnesses. Acad Med 2005;80:352-355. [PubMed]

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.

Kelly AM, Kratz B, Bielski M, et al. Implementing transitions for youth with complex chronic conditions using the medical home model. Pediatrics 2002;110:1322-1327. [PubMed]

McDonagh JE. Growing up and moving on: Transition from pediatric to adult care. Pediatr Transplant 2005;9:364-372. [PubMed]

Por J, Golberg B, Lennox V, et al. Transition of care: Health care professionals’ view. J Nurs Manag 2004;12:354-361. [PubMed]

Reiss JG, Gibson RW, Walker LR. Health care transition: Youth, family, and provider perspectives. Pediatrics 2005;115:112-120. [PubMed]

Rosen DS, Blum RW, Britto M, et al. Transition to adult health care for adolescents and young adults with chronic conditions: Position paper of the Society for Adolescent Medicine. J Adolesc Health 2003;33:309-311. [PubMed]

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. [PubMed]

Wiener LS, Kohrt BA, Battles HB, et al. The HIV experience: Youth identified barriers for transitioning from pediatric to adult care. J Pediatr Psychol 2011;36;141-154. [PubMed]

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APPENDIX A: CHALLENGES TO SUCCESSFUL TRANSITIONING

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APPENDIX B: SAMPLE POLICIES, TOOLS & ASSESSMENTS

The following resources contain examples of transition tools for individual facilities to develop for their own use:

1. Transition Tool

Tool to be used by provider to assess the adolescent’s knowledge of the following:

• HIV and its management
• Preventive health and safer-sex behaviors
• Use of health insurance
• Community resources

2. Adolescent Individualized Transition Plan

• This plan should be based on the patient’s needs and interests

3. Transition Healthcare Assessment

• The adolescent should fill out this sheet so the provider can assess his/her transitional needs
• Use the results to discuss needs with the adolescent

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.

4. Skills Checklist — Project STAY

5. Transition Assessment — SUNY Downstate HEAT Program

6. Transition Policy — The PATH Center at the Brooklyn Hospital Center

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1. TRANSITION TOOL

White areas are suggested ages to address individual skills but plans would be individualized based on development,
social situation and time of entrance into program. Please date and initial discussion/achievement boxes.

White areas are suggested ages to address individual skills but plans would be individualized based on development,
social situation and time of entrance into program. Please date and initial discussion/achievement boxes.

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2. ADOLESCENT INDIVIDUALIZED TRANSITION PLAN

Pre-21-year-old Transition Assessment

Projected Date:
____________________________________________________________________________________________________

Participants:
____________________________________________________________________________________________________

Education/vocation/career plan:
____________________________________________________________________________________________________

Family support:
____________________________________________________________________________________________________

Housing/goals for independent living:
____________________________________________________________________________________________________

Transportation:
____________________________________________________________________________________________________

Funding (insurance/copay/prescriptions/OTC/SSI):
____________________________________________________________________________________________________

Discuss timing of transition to adult care:
____________________________________________________________________________________________________

Other:
____________________________________________________________________________________________________

Plan:
____________________________________________________________________________________________________

Signature:
____________________________________________________________________________________________________

24-year-old Transition Assessment

Projected Date:
____________________________________________________________________________________________________

Participants:
____________________________________________________________________________________________________

Education/vocation/career plan:
____________________________________________________________________________________________________

Family support:
____________________________________________________________________________________________________

Housing/goals for independent living:
____________________________________________________________________________________________________

Transportation:
____________________________________________________________________________________________________

Funding (insurance/copay/prescriptions/OTC/SSI):
____________________________________________________________________________________________________

Transition to adult care, choose provider:
____________________________________________________________________________________________________

Plan:
____________________________________________________________________________________________________

Signature:
____________________________________________________________________________________________________

Initial adult care appt:
____________________________________________________________________________________________________

Physician:
____________________________________________________________________________________________________

Phone:
____________________________________________________________________________________________________

Records release consent signed:
____________________________________________________________________________________________________

Records forwarded:
____________________________________________________________________________________________________

First appt follow-up phone call:
____________________________________________________________________________________________________

3 month follow-up phone call:
____________________________________________________________________________________________________

University of South Florida, Pediatric Infectious Disease

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3. TRANSITION HEALTHCARE ASSESSMENT

Adapted from California Healthy and Ready to Work transition materials, 1 MCJ D6HRW9-01-0, University of Southern California, Department of Nursing.

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4. SKILLS CHECKLIST — PROJECT STAY

The following handout can be used to prompt older adolescents to think about the information they will need to know in an adult care setting. Recently transitioned young adults can use the handout as a reminder of the issues they need to address with their current provider.

Taking Charge of Your Health Care:
A Handout for Adolescents and Young Adults with Special Health Care Needs

Be Your Own Health Care Advocate

• Learn about your condition.
• Know the warning signs that mean you need emergency help.
• Know who to call in caseof an emergency, and carry that information with you.
• Learn how to make your own appointments.
• Write down any questions you have before you go to the doctor’s office.
• Meet privately with your health care providers.
• Speak up and ask your health care provider questions. If you don’t understand the answer, ask again.
• Talk to your doctor about difficult topics like relationships, drugs, and birth control.
• Ask for copies of medical tests and reports.
• Carry your insurance card and other important health care information.

Take Charge of Your Health Care Information

• Be sure to understand the medications that you are taking. What are their names and when do you take them?
• Know how to call your pharmacy and how to fill your prescriptions.
• Make sure you know your insurance and how to get a referral.
• Keep a list of addresses and telephone numbers of all your health care providers and community resources.
• Keep a notebook of medications, medical history, and results of medical tests.
• Ask health care provider for a short written summary of your health condition.
• Know how to order and take care of any special supplies you use.

Plan for Transfer to an Adult Health Care Provider

• Talk to your doctor and know how and when you should start seeing an adult doctor.
• Discuss with providers resources that might be helpful to you.
• Meet and talk with the new health care provider before you switch.

Adapted with permission from materials produced by the Institute for Community Inclusion at Children’s Hospital, Boston, as part of the Massachusetts Initiative for Youth with Disabilities, a project of the Massachusetts Department of Public Health. Supported in part by project #HO1MC00006 from the Maternal and Child Health Bureau (Title V, Social Security Act), Health Resources and Services Administration, Department of Health and Human Services.

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5. TRANSITION ASSESSMENT — SUNY DOWNSTATE HEAT PROGRAM

Name:
____________________________________________________________________________________________________

Date:
____________________________________________________________________________________________________

DOB:
____________________________________________________________________________________________________

Gender:
____________________________________________________________________________________________________

Please Circle One:

Knowledge of your health:

1. Do you understand what caused your medical condition?

     Yes          No          N/A

2. Do you understand the changes caused by your medical condition?

     Yes          No          N/A

3. Do you manage your daily treatment needs?

     Yes          No          N/A

What are they?
____________________________________________________________________________________________________
____________________________________________________________________________________________________

4. Do you have any problems with your daily treatments?

     Yes          No          N/A

What are they?
____________________________________________________________________________________________________
____________________________________________________________________________________________________

5. Do you understand the action of the medications you take?

     Yes          No          N/A

6. Do you have understanding of the laboratory tests you have?

     Yes          No          N/A

Explain:
____________________________________________________________________________________________________
____________________________________________________________________________________________________

7. Do you know the results of your latest blood test?

     Yes          No          N/A

8. What are they?

T-cell:
____________________________________________________________________________________________________
____________________________________________________________________________________________________

Viral load:
____________________________________________________________________________________________________
____________________________________________________________________________________________________

What you do to keep healthy:

1. Do you have a doctor that you see regularly?

     Yes          No          N/A

Who is it?
____________________________________________________________________________________________________
____________________________________________________________________________________________________

2. Are you up to date with immunizations and healthcare screening?

     Yes          No          N/A

3. Do you use alcohol?

     Yes          No          N/A

4. Do you use cigarettes?

     Yes          No          N/A

5. Do you use drugs?

     Yes          No          N/A

6. Do you engage in unprotected sex?

     Yes          No          N/A

7. Do you exercise regularly?

     Yes          No          N/A

If yes, what do you do?
____________________________________________________________________________________________________
____________________________________________________________________________________________________

How often?
____________________________________________________________________________________________________
____________________________________________________________________________________________________

8. Do you see a dentist on a regular basis?

     Yes          No          N/A

9. Do you brush and floss your teeth?

     Yes          No          N/A

10. Do you know when you’re getting sick such as a cold?

     Yes          No          N/A

What to do in an emergency:

1. Do you have a phone to use in case of an emergency?

     Yes          No          N/A

2. Do you have phone numbers of friends and family to call in case of an emergency?

     Yes          No          N/A

3. Do you know where the closest ER is?

     Yes          No          N/A

Know how to manage your healthcare needs:

1. Are you responsible for making appointments with your providers?

     Yes          No          N/A

2. Are you responsible for refilling your medications?

     Yes          No          N/A

3. Do you have an attendant, home health aide?

     Yes          No          N/A

4. Are you responsible for their supervision?

     Yes          No          N/A

5. Do you hire the attendants that you need?

     Yes          No          N/A

Know how to communicate effectively:

1. Do you know how to seek answers to health related concerns?

     Yes          No          N/A

2. Are you able to ask questions of your providers?

     Yes          No          N/A

3. Are you able to make contact with teen/young adult support groups/camp?

     Yes          No          N/A

Know how to use community resources:

1. Do you know how to get services in your area?

     Yes          No          N/A

2. Have you used services in your area?

     Yes          No          N/A

3. Are you able to use community transportation when you need it?

     Yes          No          N/A

Demonstrates responsible sexual activities:

1. Are you able to avoid dangerous situations (victimization)?

     Yes          No          N/A

2. Are you able to provide a reliable sexual history?

     Yes          No          N/A

3. Do you know what an STD is and how it can affect you?

     Yes          No          N/A

4. Do you know about contraception and ways to prevent STDs?

     Yes          No          N/A

Information regarding reproductive health:

1. Do you know when to seek birth control counseling?

     Yes          No          N/A

2. Do you understand the problems associated with teenage/unplanned pregnancies?

     Yes          No          N/A

3. Do you think you understand the responsibilities of being a parent?

     Yes          No          N/A

Keep track of health records:

1. Do you have a copy of your health records?

     Yes          No          N/A

2. Does your doctor/dentist have a copy of your health records?

     Yes          No          N/A

3. Do you have an insurance card or copy of it?

     Yes          No          N/A

4. Do you have a method of keeping track of your health appointments?

     Yes          No          N/A

Knowledge of health insurance and issues:

1. Do you know the eligibility requirements for your health insurance?

     Yes          No          N/A

2. Have you applied for income assistance (SSI) and other public services?

     Yes          No          N/A

What are they?
____________________________________________________________________________________________________
____________________________________________________________________________________________________

Uses transportation safely:

1. Do you have a driver’s license?

     Yes          No          N/A

2. Do you use the buses, trains and/or other types of public transportation?

     Yes          No          N/A

3. Do you have the money you need to get bus passes/use your car?

     Yes          No          N/A

4. Do you have any trouble getting to your travel destinations?

     Yes          No          N/A

Transportation etiquette:

1. Do you use Dial-a-Ride, Access Van?

     Yes          No          N/A

2. Do you feel safe taking the bus, van, driving?

     Yes          No          N/A

3. Do you usually arrive and leave on time?

     Yes          No          N/A

4. Do you know how you should interact with strangers when traveling using public transportation?

     Yes          No          N/A