Campaign Webinar Adolescent to Adult Transitions in+care May 22, 2013

1. Campaign Webinar Adolescent to Adult Transitions in+care May 22, 2013 1

2. Actively participate and write your questions into the chat area during the presentation(s) Do not put us on hold Mute your line if you are not speaking (press *6, to unmute your line press #6) Slides and other resources are available on our website at incareCampaign.org All webinars are being recorded Ground Rules for Webinar Participation 2

3. Agenda • Welcome & Introductions, 5min • Campaign Data Review, 10min • Transitions in+care, 30min • Question & Answer, 10min • Updates & Reminders, 5min In the chat room, Enter your: 1. name, 2. agency, 3. city/state, and 4. professional role at agency 3

4. Medical Visit Frequency by RW Part Funding 4

5. Viral Suppression by RW Part Funding 5

6. Submit Improvement Updates! 6

7. Improvement Update Discussion Interventions Submitted by Participants • Keep original case manager until patient is firmly rooted in their new medical home • Have first appt with new provider in the original care setting • Consumer led movie nights for youth with food and discussion at the adult care center where adolescents will transition • Text reminders and follow-ups to improve adherence to tx plan • Allow patients to communicate or make comments/suggestions via text or online • Conduct discovery interviews on both ends of the transition and have providers compare notes on patient experience 7

8. Improvement Update Discussion Barriers Pertaining to Youth Noted by Participants • Adult providers often lack the warmth and patience that pediatric and adolescent care providers have, making transitions hard • Older teens demand maximum results with minimal effort (hardest group to maintain based on their expectations) • NJ Medicaid rollover process for new plans take 45-90 days for each individual, which can lead to interruptions in care • Challenging to enlist young consumers in quality committees • Youth are embarrassed to admit having low health literacy • Medical records have fields for cell phones, but not facebook or other accounts that are commonly used by youth to interact 8

9. Improvement Update Discussion Lessons Learned Pertaining to Youth • List individual patient barriers in the SOAP note; ensure list of barriers transitions to adult care site with patient • Adult providers need to be trained on how to effectively accept young patients transitioning from pediatric care • Patients are more responsive to a peer than a provider (unlike adult patients) • Meeting patients where they are at is the most critical thing • Even teens with inconsistently connected cell phones make updates on the facebook profiles meaning they have at least some consistent access to facebook 9

10. Transitioning HIV-Infected Adolescents from Pediatric to Adult Care • Ashley Boylan MPH, PA-C. • Andres Camacho-Gonzalez MD, MSc. Rana Chakraborty MD, PhD • Grady Infectious Disease Program-Ponce Family and Youth Clinic

12. Objectives • Epidemiology of HIV Infection in the US among Adolescents and Young Adults • Discuss the challenges associated with transitioning HIV positive youth to adult care • Discussion of Perinatal and Horizontal HIV Infection and their long-term effects • Describe evidence-based models/HIV clinical interventions for transitioning youth to adult care • Recent Recommendations • Case Presentations

13. Epidemiology

18. Challenges Transitioning Medically Ill Youth to Adult Care • Identifying adult providers versed in transitional care • Separation difficulties in youth providers • Youth’s resistance to change • Communication problems between youth and adult providers • Less time/resources for adolescents in adult practice settings • Lapses in insurance • Little knowledge of navigating adult healthcare delivery system New York State Department of Health AIDS Institute and Division of Infectious Diseases, The Johns Hopkins University School of Medicine. (2011).Transitioning HIV-Infected Adolescents into Adult Care: HIV Clinical Guidelines and Best Practices from New York State. New York State Department of Health AIDS Institute: New York.

19. Transitioning to Adult Care • Few studies in HIV infected adolescents and young adults • Multiple challenges • 1-stop shopping models are less likely in the adult population • Programs and support mechanisms to improve adherence are usually not available with adult providers. • Gender identity and Sexual orientation: Transfer care to practices who are lesbian/gay/bisexual/ transgender friendly • Insurance issues • Stigma and fear of discrimination

20. Perinatal and Horizontal HIV Infection during Adolescence • 2 distinct populations that require different approaches • Horizontally infected • Perinatally infected • Adolescent-centered Care • One-stop shopping model of multidisciplinary care • Gynecologic services • Mental Health • Prevention and case management • Flexible appointments and Walk-in capacity

21. HIV-Specific Challenges • Stigma • Increased need for mental health/case management • High rates of teen pregnancy • Lack of disclosure to support group • Multiple losses • Limited social support • Fear of seeing “sick” patients in adult clinic • Lack of providers in rural areas

22. HIV-Specific Challenges (cont.) Perinatally Infected Non-Perinatally Infected • Non-disclosure to caregiver • High rates of homelessness & incarceration • Non-disclosure by guardian • Loss of emotional support • Barriers in achieving milestones • Complex clinical issues

23. Perinatally Infected Adolescents • 91% of HIV perinatally infected youth survived into adolescence and young adulthood • 45% of the perinatally-infected adolescents in their cohort had been sexually active • 43% of HIV positive youth report not using a condom in their last intercourse • 25% admitted inconsistent condom use • Frequently engaged in high risk behaviors • 40-60% continue to engage in unprotected sexual intercourse after learning their HIV status • 24% become pregnant before their 19th birthday Koenig, L.J., et. al, J Acquir Immune Defic Syndr, 2010. 55(3): p. 380-90 Leonard, A, Perspect Sex Reprod Health, 2010 June; 42(2): 110-116

24. Horizontally Infected Adolescents HIV Disease Course • Adolescents are entering care with significant immune dysfunction • REACH study showed that median CD4 count in adolescents was 410 cells/ml • 50% of women and 75% of males had counts less than 500 at study entry • 27%-35% had AIDS • Adolescents are more likely to have immune reconstitution syndrome • 16-20% are entering care with baseline resistance mainly to NNRTIs J. Adolesc Health 2001 Sep;29(3 Suppl):39-48.

25. Psychological Issues • Adolescents are still concrete thinkers • Difficulty understanding and believing the concept of disease latency and asymptomatic infection • Disclosure and partner notification • Parental disclosure may be difficult • Taking medication under a non-disclosure environment is also challenging • Provide help with partner notification

26. Adherence to ARV and Resistance in Perinatal Cohorts • PACTG 219 • 10% increase in the odds of non-adherence for each year of age • Perinatally-infected children in the US average a median of 5 HAART regimens by the time they reach adult care. • Resistance • 52% had dual class resistance • 12 had triple class-associated resistance • Medication fatigue and high pill burden and increase responsibility for medication administration

27. Long Terms Effects of HIV Infection • CNS abnormalities • Encephalopathy has decreased • Cognitive deficits • Attention deficits • Cardiovascular Disease and Metabolic abnormalities • Abnormal serum triglycerides and LDL cholesterol • Increased carotid artery intima media thickness • Fat redistribution • Insulin resistance (7-52%)

28. Long Terms Effects of HIV infection • Bone Loss • HIV infected youth have altered bone metabolism and lower bone mineral density than age-matched controls • The pathogenesis is unclear • Use of HAART may predispose to increase bone turnover • Tenofovir has been associated with increase risk of having a decrease in bone mineral density. • Renal Disease • Deaths due to renal disease have increased in HIV infected children and adolescents • Disease vs HAART

29. Transitioning to Adult Care 5 phase approach • Discussion with patient • Meeting of Adult provider in the adolescent clinic • Check-up with the adult provider in the adolescent clinic • First appointment wit the adult provider is accompanied by the adolescent social worker • 1 year of follow-up with the adolescent physiological team New York State Department of Health AIDS Institute and Division of Infectious Diseases, The Johns Hopkins University School of Medicine. (2011).Transitioning HIV-Infected Adolescents into Adult Care: HIV Clinical Guidelines and Best Practices from New York State. New York State Department of Health AIDS Institute: New York.

30. Facility Level Interventions • Identify adult care providers • Prepare medical summary • Arrange meeting with patient, pediatric and adult providers • Engage multidisciplinary team in transition • Designate one person to oversee transition New York State Department of Health AIDS Institute and Division of Infectious Diseases, The Johns Hopkins University School of Medicine. (2011).Transitioning HIV-Infected Adolescents into Adult Care: HIV Clinical Guidelines and Best Practices from New York State. New York State Department of Health AIDS Institute: New York.

31. Knowledge Base Interventions • Involve family/support system • Ensure disclosure of serostatus • Address individual barriers • Teach youth to navigate adult healthcare system • Ensure understanding of basic HIV biology • Ensure understanding of HIV medications • Develop life skills • HIV prevention counseling

32. Relational Interventions • Follow-up with transitioned patients • Invite “alumni” to programs, special events or group meetings

33. Role of Adult Provider and Adult Clinic • Assess maturity/ability to cope • Increase time spent with patient • Nonjudgmental approach to patient communication • Increased flexibility regarding appointment times • Explain clinic policies

34. Recommendations

35. New Specific Recommendations • Pediatric, adolescent, and family medicine HIV care providers, in collaboration with suitable adult HIV care providers, should develop a formal process for transition of youth to adult health care. • The patient and his or her family should be introduced to the concept of transition to adult health care early in adolescence well in anticipation of the actual transfer of care. The youth should be informed of his or her HIV status before initiating the process. PEDIATRICS Volume 132, Number 1, July 2013

36. There are 4 key steps in the transition process: • The referring provider should develop written policies to define the process of transition of HIV-infected youth to adult health care. The plan should be shared with all pediatric/ adolescent or family medicine providers, staff, and patients and their families with appropriate staff training. • The provider, the youth, and patient should jointly create an individualized transition plan well in anticipation of transition. • Transition should include creation of a portable medical summary and/or EMR and an emergency care plan. A pre-transfer visit by the patient to meet the adult health care provider should take place. • Completion of the transition should be documented, and the outcome of the process should be evaluated.

37. New Specific Recommendations • The health care coverage of the youth should be evaluated regularly to ensure that health care coverage and access to medications remains uninterrupted during transition. • The transition process should ensure that the youth’s health care, educational, vocational, and social service needs are discussed and addressed.

38. Discuss transition Assessment by provider Medical Team Meeting Adult/Pediatric Provider meeting Youth & Adult/Pediatric meeting Parent/Youth Meeting Transition decision Patient & Adult Provider Meet 1st appointment w/ adult provider Example

39. Ponce Family and Youth Clinic • Grady Infectious Disease Program under Grady Health Systems. • Clinic funded by RW Parts A,B & D. • Medical Home Model. • Services need of >5200 patients with HIV/AIDS in Atlanta MSA. • CY 2012: Grady IDP Pediatric/Adolescent Program served 376 youth ages 13-24. • In 1st four months of 2013 have seen and enrolled 34 newly infected youth.

40. Profile of many newly diagnosed youth (13-24 years) at PFYC • Homeless and hungry • Unemployed with no prospects • Constantly stigmatized and exposed to violence • Mental health diagnoses including self-loathing and denial • Further risk behavior and secondary HIV transmission • Poor insight into HIV. Difficult to engage in care • CD4’s in single or double digits • Recurring STI’s and OI’s

41. Case 1 – Patient DT • 24 y/o HIV+ MSM AA male • HIV Diagnosis in 2004 • Enrolled into Grady IDP-PFYC at age 16 • Multiple sexual partners • Recurrent STIs including: • Syphilis x 2 • Multiple HPV anal condylomas • Recurrent G/C infections • ASCUS

42. Case 1 – DT • Inconsistent compliancy to care • HIV Resistant Testing showing a K103N mutation after failing Tenofovir-Emtricitabine-Efavirenz • Nadir 208 (9%) • Psychiatric diagnosis include: • Major Depressive Disorder • Anxiety • Personality disorder

43. Peer support groups Mental Health Services Flexible schedule & appointment times HIV Care Primary Care Case Management Social Work Pediatric Services for DT Case 1-DT

44. Transition Process for DT Initiate transition conversation 2 yrs prior to 25th birthday. Provider must encourage: -Compliance and education -Pt able to: Obtain refills -Schedule own appts -Reach and maintain undetectable levels Refer and establish MH care in Adult clinic 1 yr prior Identify new adult provider 9 months prior and have patient meet new provider • Last medical visit with Pediatrics: • -Confirm pt has upcoming appt with new provider • Discuss any concerns pt has • Ensure adequate refills until next MV • Provide pt with appropriate clinic personnel phone number • Motivate to stay engaged • Empower and educate Follow up appointment with pediatric provider 3 months prior Patient schedule appt with new adult provider 6 months prior Case 1-DT

45. Case 1-DT Solutions Problems DT encounters another older pt in Men’s Clinic that he once had exploitative sexual relations with and believes man who infected him Work with patient in identifying new adult provider in Women’s clinic that would ensure privacy and safety Severe anxiety and fear due to encounter. Multiple follow up w/pediatric psychologist & adult psychiatrist to discuss new onset of MH distress and coping strategies Pt unwilling to complete transition process, attempts to disappear to follow up Provided bi-weekly follow up appointments for 2 months prior to full transition to help eradicate and alleviate fear and anxiety Worsening mental health status due to fear, anxiety and stress Maintain case management and social work until new patient visit Unable to obtain new patient appt for 4 months after last pediatric Visit

46. Case 2 – Patient DC • Perinatally-infected 23 y/o female • Diagnosis in 1989 at age 1, been followed by pediatric team for 22 years prior to transition • Patient’s problem list includes: • HIV encephalopathy • Developmental delay • Asthma • Cervical dysplasia • Recurrent pneumonias- LIP, PCP • Candidia sepsis • Recurrent zoster • Non-adherence

47. Case 2 - DC • Multiple prolonged hospital admissions • Nadir 24 (2%) • Multiple NRTI, NNRTI, and PI mutations • Current medications include: Raltegravir, Etravirine, Tenofovir and Emtricitabine • Her mother died when she was13 years old from AIDS

48. Flexible schedule and appointment times Nutritional consults and services GYN, family planning services Access to multiple providers Involved in yearly summer camp for HIV infected children Primary care Psychological services and grief counseling Peer support groups Case Management HIV Care Pediatric Services for DC Social work Case 2

49. Transition Process for DC Follow up every 2 months for 3 yrs to help improve provide HIV education to help improve compliance Initiate transition discussion 3 years prior to 25th birthday Co-manage opportunistic infections Establish adult GYN follow up for HGSIL 2 years prior Identify and establish adult women’s provider 1 year prior to transition Establish “goals” list with patient to encourage medical compliance 1 year prior to transition Increased involvement in young adult support groups to help patient engagement. Meet and establish adult mental health provider 1 year prior Fully transitioned by age 25. Pt has continued case management by pediatric SW for 6 months post-transition to increase adherence “Team” management with adult and pediatric provider 9 months prior Independent visit with adult provider 6 months prior Final follow up visit with pediatric provider 3 months prior Case 2-DC

50. Problems Solutions Medical non-adherence, worsening health Increased frequency of medical visits Multiple extended hospital admissions during transition time period Multidisciplinary approach to care to help increase adherence to medication Large pill burden due to multiple OIs and severe immunosuppression Weekly pill tray filling at clinic to ensure proper medication administration and adherence Disengagement in care Engagement in Women’s support groups High risk sexual behavior, multiple STIs Increase psychological support from adult provider prior to transition Major depressive episode during transition time Case 2- DC