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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

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Page 1: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

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

Page 2: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

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

Page 3: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

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 another2. Identify 3 barriers to successful transition3. Apply methods taught in the session to

circumstances in local health care settings

Page 4: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

Obtaining CME/CE Credits

• If you would like to receive continuing education credit for this activity, please visit:

http://www.pesge.com/RyanWhite2012

http://www.pesge.com/RyanWhite2012
Page 5: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

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)

Page 6: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

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

Page 7: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

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: www.hivguidelines.org

Page 8: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

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: www.hivguidelines.org

Page 9: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

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: www.hivguidelines.org

Page 10: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

Basic Steps in Transitioning

Page 11: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

Basic Steps in Transitioning

• 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

Page 12: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

Basic Steps in Transitioning

• 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

Page 13: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

Basic Steps in Transitioning

• 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

Page 14: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

Basic Steps in Transitioning

•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

Page 15: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

Basic Steps in Transitioning

Page 16: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

Basic Steps in Transitioning

•Health summary or passport•Case conference•Transition team all aware of appointment•Release of information

Page 17: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

Basic Steps in Transitioning

•Verify that initial appointment kept•For drop-outs, identify & enroll in support services •Promptly reschedule appointment•Reinforce need to transition•Allow some safety net

Page 18: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

Transition Models

Pediatric Clinic

Adult Clinic

Pediatric Clinic

Youth Clinic

Adult Clinic

Page 19: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

Transition Models

Adult Clinic

Pediatric Clinic

Youth Provider

Page 20: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

Transition Models

Comprehensive Center

(Pediatric, Adult, Family, Women, etc)

Page 21: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

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

Page 22: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

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

Page 23: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

Case 1

• Perinatal AIDS, in care at pediatric center since birth

• Frequent illnesses• Recent improvement in adherence• Losing Medicaid

Page 24: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

Case 2

• Recently infected MSM• Estranged from family, living with older

partner• Community college + part-time job• Ongoing party life, substance use• Bipolar disorder

Page 25: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

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

Page 26: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

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

Page 27: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

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

Page 28: Transition from Adolescent to Adult HIV Care – Practices & Pitfalls Tess Barton, MD – University of Texas Southwestern, Dallas, TX Ana Puga, MD – Children’s

Transition Tools Available

• Transitioning HIV-infected Adolescents Into Adult Care (New York State Department of Health AIDS Institute: www.hivguidelines.org)

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

• Adolescents Living With HIV (ALHIV) Toolkit (http://www.k4health.org/toolkits/alhiv)

• http://gottransition.org

http://www.hivguidelines.org/
ftp://ftp.hrsa.gov/hab/june2007.pdf
http://www.k4health.org/toolkits/alhiv

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