LinkedIn



Transitioning HIV-Infected Adolescents Into Adult Care

Posted June 2011

Click here to order the book

Click here or click image to download PDF version of this document.

Transitioning HIV-Infected Adolescents into Adult Care

ACKNOWLEDGMENTS

These Best Practices would not have been possible without the participation of providers at hospitals, clinics, and community-based programs. We would like to thank the following individuals for their time, expertise, and insight during the preparation of this document. Please note that as of the date of this writing, the following individuals worked with the corresponding organizations. Some of these individuals may have changed positions or organizations since this document’s publication.

John A Nelson, PhD, CPNP
Coordinator of Clinical Services
NewYork-Presbyterian Hospital
Project STAY

Joanna Pudil, MA, LMSW
Project STAY Senior Social Worker
NewYork-Presbyterian Hospital –
Columbia University

Mary Ellen Adams, RN
Program Coordinator, Maternal Child
Adolescent Treatment Services
Albany Medical Center
Department of Pediatrics

Jeffrey M Birnbaum, MD, MPH
Associate Professor of Pediatrics and
Public Health

Program Director
HEAT Program/FACES Program
SUNY Downstate Medical Center

Teri Aliotta, MEd, MSW
Director of Addiction Services
Nyack Hospital Recovery Center

Karen Thompson, LCSW
Director, PATH Family Program
Brooklyn Hospital Center

Lauren Sachs, LMSW
Case Management Manager,
PATH Family Program
Brooklyn Hospital Center

Alice S Myerson, CPNP, ANP, MSN
Primary Care Coordinator,
Adolescent AIDS Program
Montefiore Hospital

Andrew Wiznia, MD
Medical Director, HIV Services
North Bronx Healthcare Network
Professor of Pediatrics
Albert Einstein College of Medicine

Michael G Rosenberg, MD, PhD
Associate Professor of Clinical Pediatrics
Albert Einstein College of Medicine
Pediatric Consultation Services
Jacobi Medical Center

Susan Abramowitz, PhD
Assistant Professor
NYU Langone Medical Center
Department of Pediatric
Infectious Diseases

Raul Santana III
Youth Program Coordinator,
Project YOUTH
NYU Langone Medical Center
Department of Infectious Diseases

Rawiwan Hansudewechakul, MD
Chief, Pediatric Department
Chiangrai Prachanukroh Hospital

Jahlove and Max
Members of the New York State
Department of Health AIDS Institute
Young Adult Consumer Advisory
Committee (YACAC)

back to top

INTRODUCTION

Adolescents and young adults represent an increasingly large proportion of the HIV-infected population. This age group consists of perinatally infected and behaviorally infected adolescents, most of whom were infected sexually. As these adolescents grow into adulthood, their pediatric medical providers, social workers, case managers, and other care team members face the task of transitioning them into adult care settings and ensuring they can take responsibility for their own health and disease management. While young adults play a vital role in preparing for this transition to an adult care setting, pediatric and adolescent care teams can also be influential throughout this process.

The transition from adolescent care to adult care encompasses more than the physical transfer to a new clinic location. The transition to adult care requires managing and adjusting to a new organization of care in a new place with new providers, a change in the level of personal responsibility and family involvement in care, and a change in patient-provider communication. Without preparation for these essential changes, the patient can feel ill-prepared and abandoned, and runs the risk of being lost to care. To avoid these problems, the care team can help the adolescent emotionally prepare for the transition and take more responsibility for his/her health, and learn to actively engage with and navigate through the healthcare system.

The medical providers, program directors, and social workers who were interviewed for this book identified strategies used in their organizations for the successful transition of young adults from pediatric and adolescent care to adult care. Their models and suggestions are summarized below. The steps toward a successful transition vary depending on the location, size, and population of the programs, as well as on the provider and the patient. Other organizations can develop their own approaches based on their unique characteristics, tailoring services to their individual patients, but will hopefully find these strategies useful to implement in their programs.

back to top

SUCCESSFUL PRACTICES

Facility-level Steps to Provide Support to Clients Before and During Transition

  • Identify adult practitioners who are willing to care for adolescents and young adults. If the clinic or hospital is not associated with an adult care program, find reliable providers capable of working with transitioning adolescents. By developing relationships with multiple adult practitioners, patients can choose the provider that best fits their needs and preferences.
  • Prepare a portable, up-to-date medical summary. This medical summary can be given to the patient to take to his/her new provider.
  • Arrange meeting(s) between the patient, his/her adolescent practitioner, and the new adult practitioner. This allows the patient to meet his/her new provider in a comfortable and safe setting and gives those involved a chance to discuss the patient’s medical and psychosocial history.
  • Engage a multidisciplinary team in the development and enactment of the individualized transition plan. Involving medical providers, case managers, social workers, mental health providers, and other clinic staff ensures that no information provided by the patient is lost and that all aspects of the transition are addressed and reinforced. This also allows providers to emotionally prepare for the departure of the patient.
  • Identify a staff person at the clinic/hospital who is in charge of overseeing transition. This person can coordinate transition activities, assess the patient’s readiness to transition, and monitor the patient’s skills and knowledge development.

back to top

Develop the Necessary Skills and Knowledge Base for a Successful Transition

  • Involve the patient’s family when appropriate.
  • Discuss transition before it occurs. Introduce the idea of transitioning to the patient 1 to 3 years prior to the actual time of transition. This gives the patient time to think about, ask questions about, and help prepare for the transition.
  • Disclose HIV status to perinatally infected youth. If the adolescent is not aware of his/her status prior to transition, work with the adolescent and his/her family to address barriers to disclosure. See Disclosure of HIV to Perinatally Infected Children and Adolescents.
  • Address individual barriers to transitioning such as developmental delays, insurance problems, transportation issues, mental health status, lack of family support, emotional readiness to transition, and health literacy.
  • Develop the adolescent’s ability to navigate the healthcare system. The adolescent should be able to perform key activities such as making and keeping appointments, knowing when and how to seek medical care, and identifying and describing symptoms.
  • Ensure the adolescent understands HIV medication. Before transition, the youth should know how to read the directions on a medication bottle, know how to refill medication, know how medication works, and know why adherence is important.
  • Ensure an understanding of basic HIV biology. The adolescent should know how HIV is transmitted, how to prevent transmission, and what his/her laboratory test results mean.
  • Develop life skills by helping the adolescent create and address both short- and long-term goals related to school, employment, parenting, and permanency planning.
  • Provide prevention counseling. The adolescent should know why it is important to protect him/herself from acquiring new strains of HIV (superinfection) or other STIs and why it is important to prevent transmission to others. The adolescent should also know how to prevent various modes of HIV transmission, including risky sexual behavior, injection drug use, and mother-to-child transmission. If the patient is interested in having a child, the provider should help the patient with preconception planning. See Preconception Care for HIV-Infected Women.

back to top

Maintain a Relationship with Transitioned Young Adults

  • Check in with transitioned patients to make sure they have remained in care with their new adult practitioner. If they have not, work with them to find a new provider and to address the reasons they have fallen out of care. Instead of closing patient records after completion of transition, it may be important to maintain those records; patients often return for further care, or need additional assistance if the initial transition is not successful.
  • Invite program “alumni” to special events or group meetings. This allows transitioned young adults to maintain a relationship with individuals at the program, allows them to serve as mentors to younger patients, and shows current clients that when they transition they are not losing all ties to the clinic.

back to top

FACILITY HIGHLIGHTS

Overcoming Barriers to Transition: A Focus on Health Literacy – Project STAY
NewYork-Presbyterian Hospital – Columbia University

  • Highlights
  • Address individual barriers by screening for health literacy
  • A multidisciplinary team is involved in the transition process
  • Work with the adolescent to find a new provider in a setting where they are comfortable
  • Develop skills to navigate the healthcare system

The Services To Assist Youth, Project STAY, a program supported by NewYork-Presbyterian Hospital and Columbia University’s Mailman School of Public Health, provides primary care to 70 HIV-positive and at-risk youth aged 13 to 24, most of whom were behaviorally infected with HIV. Providers at Project STAY work with youth to help them develop the skills and knowledge base necessary to become capable adults who successfully manage their own medical care. Although the social workers lead this effort, the doctors, nurses, and psychiatrist play a key role in evaluating and developing these skills. The providers meet bi-weekly to discuss individual cases and stay up-to-date on the status of each adolescent.

The STAY care team ensures that their adolescent patients find an adult care center where they are happy and comfortable, and helps them develop the necessary skills to manage their health care as adults. By working with patients one-on-one over an extended period of time, social workers help the transitioning adolescent identify care centers that satisfy their preferences for geographic location, size, and target population. The care team has found that it is beneficial for patients to find a clinic that meets their insurance needs and caters to their particular demographic, such as men who have sex with men or women, if desired, and to find a comfortable setting, whether in a community- or hospital-based clinic. Providers monitor the progress and knowledge level of each adolescent by ensuring they understand key points about HIV management, health insurance, and available community resources (see Appendix A, Skills Checklist).

The care team also places a special focus on ensuring that each adolescent knows how to make an appointment and knows what to expect at their first meeting. If the adolescent is not scheduling their own dental or gynecological appointments, the social worker will often accompany the adolescent while making his/her first appointment with a provider – for a dental exam, a gynecological exam, or with an adult primary care practitioner – to answer any questions the adolescent may have about the process. For example, the senior social worker at STAY recalls sitting with a client making a dental appointment over the phone when the social worker realize that the client did not know when to dial the appropriate extension, which was why he had never made an appointment on his own. Social workers and medical provider from STAY also offer their cell phone numbers to their patients so they can call if they have a question during the intake process or during an exam with a new provider.

STAY is highly focused on addressing low health literacy, a common barrier to successful navigation of the healthcare system. All patients at STAY are given an annual health literacy assessment, the REALM, and the results of the assessment are kept on top of their file so the social worker and physician are reminded of the patient’s health literacy level. Once this assessment is completed, the care team can select materials and language that the patient will understand. For patients with low health literacy, the physician and social worker use more visual and verbal materials and employ a teach-back method to ensure the patient understands the information provided. To help patients with low health literacy access care outside of the STAY clinic, the team also offers to have a care team member accompany them to their first appointment at a new facility and offer to help complete intake forms for the patient. The team has found that this reduces the shame and fear some of these patients feel when accessing care with a new provider.

While adolescent practitioners can help patients with low health literacy learn to navigate the adult care setting, the adult STAY clinic also has a responsibility for adolescents to overcome this obstacle to transition. Adult STAY clinic staff can assess the health literacy level of their intake documents and, if necessary, adapt them for people with lower health literacy. They may also have staff available to help new patients fill out intake forms.

back to top

  • Case Story

A young man who had been coming to the STAY clinic for many years arrived for his regular appointment with a painful tooth infection. It was immediately apparent to the provider, a nurse practitioner, that this patient needed to see a dentist to receive proper care, but the patient refused to go. The provider knew from experience and from the young man’s health literacy test results that his health literacy skills were low, so he offered to go with this patient to the dentist. To avoid any embarrassment or shame the young man felt about his health literacy level, the provider offered to go under the pretense that the patient was experiencing a lot of pain and therefore needed help filling out his forms. The patient was hesitant at first, but eventually agreed. The next day the provider met his patient on the corner near the dentist’s office and they went in together and sat down in the waiting room to fill out the intake forms. While the young man was filling out his forms, the provider offered to help if he was in too much pain to concentrate. The patient refused at first, then after a few minutes handed the forms to the provider and said he was in too much pain to finish. When the provider looked at the forms, he saw that the young man had only filled in his name and address. The provider understood that the patient was unable to read and understand the form well enough to answer any of the other questions.

back to top

Deciding When to Transition: Using Patient and Provider Feedback to Inform Practices
Albany Medical Center Maternal Child Adolescent Treatment Services

  • Highlights
  • Seek feedback on the transition process from transitioned patients and their new providers
  • Work with the adolescent to find a new provider in a location and setting that is convenient and comfortable for them

Albany Medical Center’s (AMC) Maternal Child Adolescent Treatment Services (MCATS) program within the pediatric department cares for HIV-infected youth from 23 counties in New York State. The HIV clinicians in the department provide HIV-specific care to their patients, but do not provide primary care. Pediatric and adolescent HIV-infected patients receive primary care elsewhere, often with a provider closer to the patient’s home. Because MCATS cares for pediatric HIV-infected patients from a large geographical area, the care team starts introducing the idea of transitioning to an adult practitioner early. They explore the different options available to patients when finding a new provider, such as identifying a provider closer to home; choosing a program that is only for those with HIV, such as the comprehensive AIDS Program at AMC; or receiving care at a private infectious diseases office. Depending on the model of care a patient chooses, they may be transitioning to an adult HIV provider as well as to an adult primary care provider; or they may be transitioning to an HIV provider that offers primary and specialty care. If there are multiple transitions, planning is necessary throughout each step to accomplish the transitions. When they transition, many patients often choose to seek care in a new location. Remaining attentive to the changes in providers, as well as the change of location, the care team for each patient works to ensure that the patient is ready to transition and is not making too many changes at one time.

The MCATS clinic works to transition their patients to adult HIV practitioners by age 24. This age was determined after many years of transitioning adolescents and receiving anecdotal feedback from patients and from MCATS providers about individual readiness. The MCATS clinic originally transitioned patients at age 18, but discovered that often more preparation and stability were needed to promote successful transition and care in the adult care setting. MCATS providers noted that adolescents would benefit from more time in the pediatric program where they learn about their own health, about HIV, and about navigating the healthcare system. As a result, MCATS experimented with transitioning patients around age 21, and worked on developing each patient’s health skills and knowledge. An informal assessment of how well prepared young adults were to transition to adult care showed that although many had the skills and knowledge to transition successfully, changing both HIV and primary practitioners at the same time proved stressful. The MCATS clinic team also found that transition should not occur during times of instability. Because of these findings, it was decided that the transition age should be extended to 24 years. Nonetheless, the exact age of transition is flexible and is based on the maturity, readiness, developmental level, medical status, and psychosocial status of the patient. Transition can occur as early as age 16 or as late as 24, depending on the patient and the adult providers who are accepting adolescent patients.

To continue evaluating and improving the transition experience for patients and the adult providers to whom their patients transition, MCATS is currently developing a formal quality improvement activity to interview and survey current patients, transitioned patients, and providers of transitioned patients. MCATS will then use this feedback to make changes in their transition process.

back to top

Avoiding Feelings of Abandonment: Fostering Lasting Connections
SUNY Downstate HEAT Program

  • Highlights
  • Discuss transition before it occurs
  • One staff member oversees transitioning patients
  • Alumni are invited back for events and support groups and act as mentors
  • Use of a skills checklist and transition plan

The Health & Education Alternative for Teens Program (HEAT), at SUNY Downstate, is a program focused on HIV-infected and at-risk adolescents and young adults aged 13 to 24 years. Most of the HIV-infected clients at the clinic were behaviorally infected with HIV. The HEAT Program builds skills and competency among their adolescent and young adult clients to facilitate the ultimate goal of transition to an adult care setting. A transition coordinator performs an annual assessment of the competency and readiness of each patient to transition. Clients read and fill out the transition form on their own before reviewing it with a transition coordinator, allowing the assessment form to double as a health literacy screen (see Appendix B, Transition Assessment). Recognizing that it is common for young adults to feel emotionally attached to their pediatric provider and the adolescent clinic, HEAT works with both their current and transitioned patients to ensure that they do not feel abandoned, but rather that they are taking a positive step forward. The program creates an ongoing connection by helping adolescents develop leadership skills and by offering them paid and volunteer positions with the HEAT Program. They also promote involvement with organizations outside of the clinic, such as HEAT’s consumer advisory groups and the AIDS Institute’s Young Adult Consumer Advisory Committee.

Transition can be difficult for adolescents, because they have developed deep personal and emotional bonds with their physician, fellow patients, and other staff members at the program. Clients at HEAT often see the clinic staff and fellow clients as a surrogate family and value the safe and supportive environment of the adolescent clinic, making transition an especially difficult next step. As a result, HEAT engages young adult volunteers and employs staff who have successfully transitioned to adult care through the program. HEAT “alumni” often serve as mentors and offer guidance to younger adolescents who are having trouble transitioning or staying in care. Alumni are also invited to participate in select activities and support group meetings. This system is seen as a “safety net” in which alumni provide peer support and advice for current patients who have yet to transition. The continuing connection also allows patients to connect to the program after transition and maintain a relationship with the care team they grew to know and trust. These continued connections demonstrate the valuable and long-term relationships developed through the HEAT Program, and serve as affirmation to adolescent and young adult patients that they will not be forgotten once they reach the age of transition and begin to receive medical care from an adult provider.

back to top

TRANSITION IN A FAMILY-CENTERED SETTING

Creating a Dialogue Between the Adolescent and Adult Physicians – FCIC
Nyack Hospital and the Rockland County Department of Health

  • Highlights
  • Hold meetings with the patient, the patient’s pediatrician, and the new adult medical provider
  • Develop both medical and non-medical self-care skills

The Family Centered Immunotherapy Clinic (FCIC) is a joint program between the pediatric clinic at Nyack Hospital and the Rockland County Department of Health. The FCIC applies a family-centered approach to its medical care as well as to the transition process for young adults. Most of the approximately 25 HIV-positive children who attend this program were perinatally infected with HIV and many have been in foster care. One quarter of the children who were at one time in foster care have been reunited with their birth families and the remainder live full time with their foster parents. The FCIC applies a family-centered approach to care by providing medical services to all HIV-infected members of a family and by providing case management, mental health, nutrition, and referral services to other members of the immediate family.

The family-centered nature of the clinic allows HIV-positive adolescents who have been receiving care at the FCIC clinic for many years to transition from a pediatric medical provider to an adult medical provider within the same clinic. Seeing a new doctor in the same clinic makes transition to a new provider less stressful for the patient by allowing the young adult to receive care at the same place, on the same day of the week, and see many of the same people at the clinic. The transition process is also made easier because adolescents can have joint meetings with their pediatrician and their new provider. The medical providers can discuss the patient’s medical history so the patient does not feel like he or she is starting anew with a provider who knows nothing about them. These meetings also give the patient an opportunity to meet their new provider while still feeling safe and comfortable with their pediatrician.

The close relationship between the pediatric and adult providers is fostered by monthly meetings in which all FCIC providers discuss individual patients and families. These meetings are often a forum for a newly transitioned patient’s current and former physicians to discuss specific care related issues. These meetings also provide time for providers who are treating different members of the same family to discuss medically relevant information about the family that may impact an adolescent who is preparing to transition. For example, if an adolescent’s parent or sibling is having mental or physical problems, this will significantly affect the transition process and requires careful planning.

The collaboration between pediatric and adult providers at FCIC makes the transition process as smooth as possible for young people with HIV, but it is not the only way adolescents are prepared for the transition to adult care. In keeping with the clinic’s family-centered approach to care, case managers usually meet with families as a group. As children age, case managers will meet with them individually as well as in a group with their family. These individual meetings allow case managers to discuss issues that teenagers may not want to discuss while parents or siblings are present. They also offer the case manager a chance to evaluate the medical and life skills of the adolescent. Case managers at FCIC evaluate these skills and development using the Casey Life Skills (http://caseylifeskills.org) model, which was designed specifically for foster children but can be applied to most young people. The Transition Developmental Checklist (see Online Resources) is also used. In addition to tracking an adolescent’s developmental abilities, case managers work with adolescents to help them learn and gain skills, such as properly reading and interpreting prescription medication labels. Case managers at FCIC have found that helping children develop these skills aids in the transition to adult care and leads to a more independent lifestyle. In fact, transitioning adolescents often wind up teaching their HIV positive parents important lessons, such as medication adherence.

back to top

Using a Multidisciplinary Team – The PATH Center at the Brooklyn Hospital Center
Brooklyn Hospital Center

  • Highlights
  • Involve a multidisciplinary team in the transition process
  • Hold meetings with the patient, the pediatrician, and the new adult medical provider
  • Develop essential medical management skills

The Program for AIDS Treatment & Health (PATH) Center Family Program at the Brooklyn Hospital Center uses their family-focused approach to care and their care-coordination model to facilitate a smooth transition. The PATH Center aims to have all children who are receiving care in the pediatric clinic transitioned to the adult clinic by the time they reach the age of 24. To achieve this goal, case managers, physicians, and mental health professionals all work together to ensure that each patient receives comprehensive care, learns about and understands how to manage their health, and is emotionally prepared to transition. Each adolescent’s care team works with them to make sure they have necessary health information, such as how to contact their provider in case of an emergency; what medications they are taking; how to prevent the spread of HIV; and their CD4 and viral load levels, and what these levels signify. All adolescents in the program receive an assessment to gauge their emotional and cognitive development. This assessment helps guide the care team when deciding when and how to begin discussing transition (see Appendix C, Transition Policy). The education involved in preparing an adolescent to transition is so comprehensive that adult providers have found that their transitioned adults are often more knowledgeable about their health and about HIV than some of the other adults in the clinic.

The social worker is the leader of the transition process; however, all members of the care team play an active role in preparing the adolescent for transition. The PATH Center incorporates all members of the care team in the transition process because clients may feel comfortable sharing different pieces of information with different people. As one social worker commented, “We don’t want anyone or any piece of information falling through the cracks.” Although all members of the care team play an active role in readiness assessment and skills development, this work is carefully coordinated: each member of the team understands the whole picture. Transitioning patients are often discussed during monthly case meetings to ensure all members of the care team are aware of all clinic activities associated with those patients. This allows all staff members working with one patient to share information and report on patient progress.

The PATH Center pediatric clinic is located inside the adult clinic—one must walk through the adult clinic waiting room to get to the pediatric clinic—serving as a physical embodiment of the close relationship between staff at these clinics. The physical layout of the center also eases the transition from the pediatric to the adult clinic for the patient. After many years of receiving care at the pediatric clinic, a transitioned young adult can receive adult care at the same location. When young adults are ready to transition, their case manager will take them on a walking tour through the adult clinic to meet with the reception staff, nutritionist, mental health provider, and other staff members. After meeting the staff at the adult clinic, the transitioning patient will meet with his or her case manager, pediatric physician, and new adult physician to get acquainted and ask questions or express concerns about transition. Once the patient has successfully transitioned, he or she will continue to work with the same case manager. The pediatric and adult physicians have opportunities to discuss the patient formally during monthly case meetings. Transitioning youth from one part of the same clinic to another has fostered continuity of care. Of note, none of the PATH Center’s patients have dropped out of care during the transition to an adult provider.

back to top

DEVELOPING LIFE SKILLS

Decision Making and Independence – Adolescent AIDS Program
The Children’s Hospital at Montefiore Medical Center

  • Highlights
  • Prepare a portable, up-to-date medical summary
  • Develop the adolescent’s ability to navigate the healthcare system
  • Develop life skills to help the adolescent transition into adulthood

The Adolescent AIDS Program (AAP) at The Children’s Hospital at Montefiore Medical Center provides comprehensive HIV care to youth aged 13 through 24 years. Approximately two-thirds of the patients at the AAP have behaviorally acquired HIV infection, and, of these, two-thirds are young men who have sex with men. One-third of the total population of the AAP have perinatally acquired HIV. The Adolescent AIDS Program works with patients to help them make informed medical decisions and take responsibility for their own care. One of the program’s goals is to help adolescents shift away from the prescriptive model of medicine common to pediatrics so they can function on the more active, informed consent model of medicine that is typical of adult care.

To help patients become informed decision makers and confidently speak for themselves, staff at the Adolescent AIDS Program provide their patients with information and help them build specific skills. The providers in the program work with patients to help them develop the skills necessary to identify and describe symptoms, and to take appropriate action. The pediatrician asks very specific, detailed questions during physical examinations so the patient can learn the proper terms to describe body parts and effectively communicate physical discomfort. Social workers spend time helping the adolescents understand their insurance and how to maintain coverage, as well as understand instructions on their medication bottles so they can follow medication directions correctly.

As the time to transition approaches, the patient and his/her physician will review the medical record together so the patient knows how to talk about and deliver their medical history to a doctor. When medical school students are in the clinic, older patients are asked to deliver their own medical history to the students so they can practice this skill before going to an adult clinic. This experience offers a chance to work through the emotions of remembering the time of their diagnosis or disclosure. Once a patient is ready to transition, their physician gives them a copy of their medical record to give to their new provider. A “graduation ceremony” called the “Celebration of Life” is held in May of each year for the “graduates” of the program to mark the accomplishments they have achieved; this signals their departure from the clinic as a positive step forward in life.

Along with these specific skills, the social worker and medical providers help their patients discover how to live an active, empowered life and integrate doctor visits and blood tests into their routine activities. To do this, the care team works with each patient to develop skills for accessing care and helps them take small steps toward achievable goals, such as making and keeping quarterly appointments at the clinic. For example, once a patient manages to come into the clinic for four walk-in visits in one year, the provider may suggest that the patient schedule their next appointment at the clinic. If they successfully schedule an appointment but do not actually come to the clinic at the right time, the provider will work with that patient to develop the skills to make an appointment and to plan to arrive to the clinic at the appointed time.

An important component of skills building and transition to adult care is applying learned skills and making informed decisions about one’s own health care. Providers at the AAP supply their patients with enough information to make a decision, offer guidance and advice as to what they think is best, and then allow their patients to make individual decisions. Encouraging adolescents to make decisions and supporting their choices promotes a relationship between physician and patient that is based on trust and support.

back to top

Transitioning the Whole Person
Jacobi Medical Center

  • Highlights
  • Develop life skills to help the adolescent transition into adulthood
  • Develop the adolescent’s ability to navigate the healthcare system
  • Ensure an understanding of HIV biology and medications

The pediatric HIV service at Jacobi Medical Center provides primary and HIV care to behaviorally and perinatally infected youth and young adults. The providers at Jacobi Medical Center view their approach not as transitioning adolescents to adult medical care, but rather as helping children transition into teens, teens into adolescents, and adolescents into adults in all aspects of their life. The Director of the Pediatric HIV Services at Jacobi Medical Center explained, “Many of our kids have never transitioned well in anything – from elementary to middle school, from middle school to high school.” He noted that the doctors and social workers who work with HIV-positive youth put a lot of time into getting to know their patients and helping them grow up to become healthy adults. This often means working with patients to help them stay in school, find a job, settle into stable housing, or maintain medical insurance coverage. This focus on transitioning a person through all aspects of life and maintaining a relationship with one’s longstanding provider is based on the philosophy of the Jacobi pediatric HIV service: If a patient is happy and comfortable with their doctor, there is no reason to terminate the relationship. As patients grow older and require certain adult services, such as a visit to the gynecologist or the cardiologist, patients can take advantage of other services in the hospital and arrange a visit with a specialty doctor within the hospital on the same day as their appointments at the HIV clinic.

To help patients transition to adulthood, the providers at Jacobi work with their patients on both medical and non-medical matters. For example, a 19-year-old patient who has received care at Jacobi her entire life has been involved in HIV activism for many years, has a stable job, is considering going to college, and moving out of her mother’s house to gain a greater degree of independence. To help this patient transition in her medical life, and her life as a whole, her provider encourages independence in making appointments and promotes learning about her health insurance coverage. The providers also help patients explore options for college and affordable housing. In this way, providers work with transitioning patients to achieve stable lifestyles that are not defined by their HIV status.

Providers use teach-back methods and ask questions of their patients to ensure understanding and comprehension of the information they review together. When one doctor found that his patient was not taking her medication regularly he asked her if she thought it was better to stop taking her medication entirely or only take it occasionally. When the patient replied with the incorrect answer, they reviewed the chemistry of how the medications work and how HIV can develop resistance if medication is not taken consistently. Another patient, who was perinatally infected and had been seeing a doctor at Jacobi her entire life, described how two nurses from the center came to her house with pictures and diagrams when she was very young to explain what HIV is and how she became infected. When the girl was a little older, the same nurses taught her more about HIV and about living with the virus and were available to answer questions while providing her with support and hope.

Although the disclosure discussions, HIV education, and guidance offered at Jacobi Medical Center are not intended to prepare patients to move on to a new provider in an adult care setting, they are designed to help children learn about HIV and develop the necessary skills to become more independent and transition into adulthood. The knowledge and self-efficacy that is developed through this process allows young adults to self manage their health and participate in more independent, adult-style care with providers they know and trust. If the patient does eventually decide to receive care at the nearby adult HIV clinic, or if they move and need to find an adult HIV provider closer to their new home, the patient will arrive with the basic skills and knowledge needed to remain in care.

back to top

UTILIZATION OF GROUPS

Healthy Living Program: Lower New York Consortium
New York University School of Medicine

  • Highlights
  • Alumni are invited back for events and support groups and act as mentors
  • Develop the adolescent’s ability to navigate the healthcare system
  • Develop life skills

The Healthy Living Program is a series of workshops focused on promoting healthy lifestyles and developing self-management skills for HIV-infected young people. While the audience for the workshop is not restricted to young people who are transitioning from pediatric to adult care, the program plays a valuable role in preparing young adults for managing their own health, a prerequisite for obtaining care successfully in the adult clinic setting. The program was developed by the NYU School of Medicine’s Lower New York Consortium for Families with HIV and has been implemented in multiple clinics in New York City. The Healthy Living program is an extension of the Adolescent Impact program, which was developed with funding from the Centers for Disease Control and Prevention.

The Healthy Lifestyles workshop is divided into nine sessions that are facilitated by a trained peer educator under the supervision of a health educator. The sessions cover many topics and skills such as developing personal health goals, developing health maintenance activities, emotional management, HIV transmission and re-infection, and becoming an effective advocate for oneself. Since the workshop sessions are structured around specific issues, clinicians, social workers, and psychologists are invited to relevant sessions to be available to answer questions and provide information. While the sessions are not intended to be support groups, the design of the workshop allows participants to explore their feelings and learn from each other. The facilitators of the workshop have found that having a mixed group of perinatally and behaviorally infected youth is beneficial to these group discussions because participants often have different experiences and knowledge to share with each other. Some facilitators have invited young adults who recently transitioned to speak at sessions to share their experiences and describe what it is like to be in an adult clinic. Participants have found this valuable because it helps them understand and prepare for the changes and differences they can expect at an adult program.

Participants in the Healthy Lifestyles program are asked to fill out a pre- and post-test to help facilitators gauge what kind of information participants gain from the sessions. These tests have consistently demonstrated that after completing the program, participants have increased knowledge about HIV and increased levels of self-efficacy — both of which facilitate transition to adult care. Providers have also noticed a difference in the way patients who have participated in the workshop interact with the clinic. They have found that patients who have completed the program start scheduling their own appointments, instead of having a family member do this for them, and keep appointments more successfully than they did before participation in the program. One medical provider also noted that patients started asking more questions about their health and about HIV after participating in the program.

back to top

Transitioning Youth in Groups: Using a “Camp” Approach
Chiangrai Prachanukroh Hospital, Thailand

Chiangrai Prachanukroh Hospital is a public hospital located in Chiangrai, Thailand. The pediatric department of the hospital has 500 patients, 360 of whom are over the age of 10, which means that each year there are many patients who are old enough to transition to the adult department. To manage the large number of patients who need to be transitioned each year, the pediatric department transitions patients in groups instead of individually. The transition program at Chiangrai Prachanukroh Hospital sponsors “camps” that teach patients about their bodies, their health, and about being part of the adult department. The camps also involve group trips to the adult department to meet with the doctors and nurses with whom they will soon be receiving care.

When children in the pediatric department of the Chiangrai Prachanukroh Hospital approach puberty they are invited to participate in a 3-day camp with their caregiver(s) and other children their age. The goal of these camps is to teach the participating youth about puberty, sex education, and general healthy living habits. The caregivers of these youth are also invited to participate in the camp, and they are taught about youth psychology and what to expect as their child gets older. Learning opportunities are punctuated by fun activities for the youth to bond and get to know each other. One highlight is an evening of plays and performances by the youth for the adults in attendance. Once the children approach the age of 15 and their doctor feels they are ready to start thinking about transition, they are invited to participate in another camp, just for youth, which focuses on antiretroviral management, HIV transmission, and learning how to navigate the adult HIV department. At the end of the camp, the youth are taken to the adult department and shown where they will go for different services, such as blood tests, primary care visits, and medication refills, and they are given a chance to meet individually with an adult practitioner.

Around the age of 18, each youth from the group that attended the camp together attends a case conference with their pediatric provider, their new provider, a gynecologist (for females), and anyone else central to their care. At these case conferences, a copy of the patient’s medical record is left with his/her pediatric provider and the original is passed on to the adult practitioner. All of the youth who participated in the camp together have their case conferences and their first few appointments in the adult clinic on the same day at the same time. This allows the group to go to the hospital, wait, get their blood tests, attend a counseling session, and have their medical appointments all together and at the same time. A pediatric provider is present at the first adult medical appointment for each transitioned youth to ensure a smooth transition and to answer any questions.

Transitioning youth in groups and having them go to their first few appointments in the adult department together creates a support system during transition and also creates positive peer influence for youth who are old enough to transition but need to work on medication adherence, decreasing alcohol use, or other factors that may be preventing them from transitioning. The first transition group included 21 youth, 16 of whom were ready to transition together. The other five were still working on adherence, substance use problems, or other issues and were not yet ready to transition. Once the first 16 had successfully transitioned, the other five worked at resolving their issues to catch up with their peers and join them in the adult department. When a new group of youth is ready to transition, they can look to their peers as experienced role models throughout the process of joining the adult clinic. A second group of 21 youth all successfully transitioned together 5 months later. The next group, approximately 20 youth, will transition soon.

back to top

PERSONAL STORIES OF TRANSITION

Max — “I want to be talked to, listened to, and treated like an adult”

The importance of treating a patient as a decision-making adult, listening to the patient, and involving the patient’s family

Max, who is now 21, grew up in upstate New York and transitioned through a less formal or typical process. At the age of 15, Max and his parents chose to move him from his pediatric HIV provider to the adult practitioner from whom his mother received care. Although he was only 15 when he left, Max can easily recall the disorganized nature of his pediatric clinic, “They kept losing my charts and changing who my provider was until we had had enough. So I just started going to the clinic my mom goes to.”

The level of organization at the adult clinic and the adult manner in which they treated him immediately impressed Max and made him feel more comfortable. At the adult care clinic, Max was given the option to have his parents accompany him during his visits. He chose to have them present for about 8 months, at which point he felt comfortable enough to meet individually with his doctor. This level of independence made Max feel a greater degree of control over his care than he did at his previous provider. This empowered him to speak up and ask questions more often, “I feel like I can tell my doctor about any aches and pains, any medication side effects I’m experiencing, just anything, and this is better for me because my doctor can only know what’s wrong if I tell him.”

In addition to feeling open to speak up, Max also felt listened to and respected, citing this as a crucial step providers can take:

    “Providers should listen to and honor what their patients are saying, no matter how old or young the patient is. I know of too many people who don’t tell their doctor important information because they don’t feel like they’re being listened to.”

Max did not receive much information about HIV, medications, or his health in general at his pediatric clinic, but he learned most of this information from his mother and by going with her to her medical appointments when he was younger. Having his parents, particularly his mother who is also HIV-infected, involved in the process of learning about HIV was also helpful for Max. He felt he was able to ask questions of his mother as well as of his doctor. Inclusion of a family member, in this case another family member who is also HIV-infected, helped Max gain an understanding of HIV and his health.

back to top

Jahlove — “Tell it like it is”

The need for honesty, openness, and support of the patient’s decisions

Jahlove is 23-years-old and plans on transitioning to an adult care clinic within the next year. He remembers that when he first started receiving care at an adolescent HIV/AIDS clinic in the Bronx his provider told him that the clinic was designed for adolescents 24 years and under, so he knew from the beginning that a transition to an adult care clinic would eventually happen. He was also informed that every year there is a graduation and celebration for everyone who has successfully transitioned, which gave him something exciting to look forward to. As he started to get closer to the 24-year-old cut-off, his social worker helped him learn about different adult HIV providers in the city so he could explore his options and choose a center that felt right for him. Jahlove stated, “It was nice because they didn’t sugar coat it, they told me I was aging out and needed to find a new provider. But then they were really helpful in helping me find a new place. I also liked that they weren’t shy about suggesting clinics that fit my demographic – like they suggested a gay-friendly place, because I’m a gay man. In the end, I’ve decided to go to the adult care clinic (within the same hospital system as my adolescent clinic) because they have my electronic medical record and it’s easy.”

In the years leading up to choosing a new clinic, Jahlove recalls that his nurse practitioner would often sit down with him and explain certain aspects of his personal health and HIV with him. He said that his nurse practitioner would periodically review his lab results with him and explain the normal range for each test and why it was the normal range, what his values were, how to keep his good lab results the way they were, and how to improve on ones that were out of the normal range. The nurse practitioner also took the time to explain the risk of HIV transmission for different sexual activities and why using a condom could decrease risk: “She really told it like it is. It was also good to have an emphasis on living a long, healthy life and not just on what is wrong.”

Jahlove feels that the staff at his clinic is supportive in helping patients become empowered, active consumers by including them at talks and conferences or asking them to serve as peer educators to support other patients. While the staff encourages and supports this behavior, they do not push patients into these more active roles before they are ready. Instead, they allow their patients to make their own decisions in an adult-like fashion and then offer guidance and support. “I really didn’t care that much or pay attention to my health and no one could have really changed that, but then I got Kaposi’s sarcoma and literally almost died. Then I kind of woke up and realized I needed to do something if I want to live a long time. Once I made this decision, my nurse practitioner and social worker were really encouraging and supportive and now I’m really involved with my own health and am involved in general.”

back to top

ONLINE RESOURCES

back to top

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]

back to top

APPENDIX A: 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.

back to top

APPENDIX B: 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

5. Do you carry the phone numbers of friends and family when you travel?

     Yes          No          N/A

Groups:

1. HIV+ Support Group

     Yes          No

2. Budgeting Group

     Yes          No

3. RAP Session

     Yes          No

4. Young Gay Men’s Group

     Yes          No

5. Transition Group

     Yes          No

6. Young Mother’s Group

     Yes          No

Transition status:
____________________________________________________________________________________________________
____________________________________________________________________________________________________
____________________________________________________________________________________________________
____________________________________________________________________________________________________
____________________________________________________________________________________________________
____________________________________________________________________________________________________
____________________________________________________________________________________________________
____________________________________________________________________________________________________
____________________________________________________________________________________________________
____________________________________________________________________________________________________
____________________________________________________________________________________________________
____________________________________________________________________________________________________

Signature of Transition Coordinator:
____________________________________________________________________________________________________

back to top

APPENDIX C: TRANSITION POLICY — THE PATH CENTER AT THE BROOKLYN HOSPITAL CENTER

Subject Transitioning Services
Policy
  • It is the policy of the Brooklyn Hospital Center Family Program to provide transitioning services to youth 21 years of age who have been in care prior to his/her 21st year. New patients who are 21 years of age are referred to the Adult PATH Program for care.
Procedure
  • The pediatric-adolescent medical provider will begin to discuss transitioning the adolescent when issues of sex, body image and body changes begin to occur.
  • Transitioning with females may start when the young woman begins her menses and needs to be referred to the Gyn provider.
  • Steps of Transitioning:

1. Assessment by the Medical Provider. This includes assessment of the young adult’s ability to: name current medications; convey that they are aware of who their provider is and how to reach the provider in case of an emergency; demonstrate a full understanding of their diagnosis and keeping medical appointments.

2. Patient will then be discussed in multidisciplinary meeting.

3. Meeting is held with the parent and the young adult.

4. Several meetings held with pediatric-adolescent CM, Adult CM, and the young adult to discuss issues or concerns the young adult might have about the transition.

5. Discussion between adult medical provider and pediatric-adolescent medical provider.

6. Transition decision is made.

7. Patient is introduced to his/her new adult medical provider.

8. First appointment made with the new adult provider.

  • When considering transition, cognitive development, level of maturity, and age-appropriate interventions are always considered.
  • Patients who have difficulty with the transition can remain in the program and age-out into the adult program at the age of 24. In this case the medical teams from both programs collaborate on the care of the patient.
  • Young adults in the process of transitioning are also given the option to continue to participate in adolescent activities until they are fully comfortable with the transition to adult care.

Approved:
____________________________________________________________________________________________________
Executive Director, PATH Center

____________________________________________________________________________________________________
Director, PATH Center

back to top