Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s Diagnostic & Treatment Center, Fort Lauderdale, FL June Trimble - University of Texas Southwestern, Dallas, TX

Disclosures Tess Barton, MD – Has no financial interests or relationships to disclose Ana Puga, MD – Speaker Bureau: Gilead, Abbott, Simply Speaking HIV CME June Trimble – Has no financial interests or relationships to disclose

Learning Objectives At the conclusion of this activity, the participant will be able to: 1.Describe steps taken in creating a smooth transition from one care provider to another 2.Identify 3 barriers to successful transition 3.Apply methods taught in the session to circumstances in local health care settings

Obtaining CME/CE Credits If you would like to receive continuing education credit for this activity, please visit:

Workshop Schedule 1. Overview of transitioning topic, including review of recommended practices and challenges (30 min) 2. Small group activity (40 min) 3. Summary (5 min) 4. Questions (15 min)

Why Is a Transition Process Needed? Deliberate, planned process that addresses the medical, psychosocial, vocational, and educational needs of adolescents and young adults with chronic conditions when moving from a pediatric service to adult-oriented care (Rosen, et. al. Journal of Adolescent Health, 2003) Adolescent development – Maturity – Autonomy Shift from pediatric to adult healthcare funding

General Principles Youth 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 New York State Department of Health AIDS Institute:

General Principles Individualize the approach used Identify adult care providers who are willing to care for adolescents and young adults Begin the transition process early and ensure communication between the pediatric/adolescent and adult care providers prior to and during transition Develop and follow an individualized transition plan for the patient in the pediatric/adolescent clinic; develop and follow an orientation plan in the adult clinic. Plans should be flexible to meet the adolescent’s needs New York State Department of Health AIDS Institute:

General Principles Use a multidisciplinary transition team, which may include peers who are in the process of transitioning or who have transitioned successfully Address comprehensive care needs as part of transition, including medical, psychosocial, and financial aspects of transitioning Allow adolescents to express their opinions Educate HIV care teams and staff about transitioning New York State Department of Health AIDS Institute:

Basic Steps in Transitioning Assess youth readiness & skillsPrepare youth for transition processEngage members of transition teamTransfer careFollow-up & evaluation

Basic Steps in Transitioning Assess youth readiness & skillsPrepare youth for transition processEngage members of transition teamTransfer careFollow-up & evaluation Begin transition planning at least 3 years before expected transition, if possible Transition checklist tools available Review and modify the plan annually Involve family, caregivers Incorporate mental health assessments Begin transition planning at least 3 years before expected transition, if possible Transition checklist tools available Review and modify the plan annually Involve family, caregivers Incorporate mental health assessments

Basic Steps in Transitioning Prepare youth for transition processEngage members of transition teamTransfer careFollow-up & evaluation Know when to seek medical care for symptoms or emergencies Make, cancel, and reschedule appointments Arrive to appointments on time Call ahead of time for urgent visits Request prescription refills correctly Negotiate multiple providers and subspecialty visits Understand health insurance, how to obtain it and renew it Understand entitlements and know how to access them Establish a good working relationship with a case manager Know when to seek medical care for symptoms or emergencies Make, cancel, and reschedule appointments Arrive to appointments on time Call ahead of time for urgent visits Request prescription refills correctly Negotiate multiple providers and subspecialty visits Understand health insurance, how to obtain it and renew it Understand entitlements and know how to access them Establish a good working relationship with a case manager

Basic Steps in Transitioning Assess youth readiness & skillsPrepare youth for transition processEngage members of transition teamTransfer careFollow-up & evaluation Pediatric/adolescent care team should consider implementing a more structured appointment system before transition to promote skills building and to minimize “culture shock” Policies are generally followed more strictly in adult care Peer support groups Skills practice sessions with medical students and residents Pediatric/adolescent care team should consider implementing a more structured appointment system before transition to promote skills building and to minimize “culture shock” Policies are generally followed more strictly in adult care Peer support groups Skills practice sessions with medical students and residents

Basic Steps in Transitioning Engage members of transition team Multidisciplinary team Pick the right adult provider Accepts patient’s health insurance (or no insurance) Pre-transition communication between pediatric and adult providers Adult clinic: assign youth contact person Case manager for youth Multidisciplinary team Pick the right adult provider Accepts patient’s health insurance (or no insurance) Pre-transition communication between pediatric and adult providers Adult clinic: assign youth contact person Case manager for youth

Basic Steps in Transitioning Assess youth readiness & skillsPrepare youth for transition processEngage members of transition teamTransfer careFollow-up & evaluation

Basic Steps in Transitioning Transfer careFollow-up & evaluation Health summary or passport Case conference Transition team all aware of appointment Release of information Health summary or passport Case conference Transition team all aware of appointment Release of information

Basic Steps in Transitioning Follow-up & evaluation Verify that initial appointment kept For drop-outs, identify & enroll in support services Promptly reschedule appointment Reinforce need to transition Allow some safety net Verify that initial appointment kept For drop-outs, identify & enroll in support services Promptly reschedule appointment Reinforce need to transition Allow some safety net

Transition Models Pediatric Clinic Adult Clinic Pediatric Clinic Youth Clinic Adult Clinic

Transition Models Adult Clinic Pediatric Clinic Youth Provider

Transition Models Comprehensive Center (Pediatric, Adult, Family, Women, etc) Comprehensive Center (Pediatric, Adult, Family, Women, etc)

Common Barriers to Successful Transition Differences between pediatric & adult care culture – Finding the right adult provider – Adolescent communication skills Separation anxiety – Youth, family – Pediatric medical team Insurance lapses and non-reimbursable duplication of services during the change Limited resources – Inadequate time and resources in adult medicine practice settings for young patients who may require extensive psychosocial support

Common Barriers to Successful Transition Poor health literacy Interim illness or pregnancy Adult clinic waiting room The rest of life’s stuff – Moving away to college – Financial instability – Job or class schedule

Case 1 Perinatal AIDS, in care at pediatric center since birth Frequent illnesses Recent improvement in adherence Losing Medicaid

Case 2 Recently infected MSM Estranged from family, living with older partner Community college + part-time job Ongoing party life, substance use Bipolar disorder

Case 3 Young woman from rural area, infected age 13 On treatment, adherent Covered by parent’s private health insurance Ready for transition Pregnancy test (+) at planned final visit

Summary of Transition Process Individualize transition plan based on patient needs Begin the process early Patient needs to be prepared Adult care provider should actively be involved Ensure that patient makes it and stays Assess youth readiness & skillsPrepare youth for transition processIdentify members of transition teamTransfer careFollow-up & evaluation

Applying the Model Locally Who are the adult providers in the area? – HIV providers, OB-GYN Ryan White providers State Medicaid program Support services and ancillary providers – Case management, housing, transportation, mental health, dental

Transition Tools Available Transitioning HIV-infected Adolescents Into Adult Care (New York State Department of Health AIDS Institute: Transitioning from Adolescent to Adult Care (HRSA Care ACTION. June Available at: ftp://ftp.hrsa.gov/hab/june2007.pdf) ftp://ftp.hrsa.gov/hab/june2007.pdf Adolescents Living With HIV (ALHIV) Toolkit (