1. www.aids2014.org Of Wings And Roots: Transitioning Adolescents With HIV Infection To Adult Care Dorothy Mbori-Ngacha UNICEF (East and Southern Africa)

2. www.aids2014.org Outline Background Adolescent transition –Individual factors –Service related factors –Clinical considerations Programmatic considerations Conclusion

3. www.aids2014.org Adolescents Living With HIV RegionNumber of adolescents living with HIV (2012) East and Southern Africa1,300 000 West and Central Africa390,000 Middle East and North Africa17,000 South Asia130,000 East Asia and the Pacific110,000 Latin America & the Caribbean81,000 Central & Eastern Europe; and the Commonwealth of Independent States 22,000 GLOBAL2,100,000 Source: UNICEF analysis of unpublished UNAIDS 2012 HIV & AIDS estimates

4. www.aids2014.org AIDS-Related Mortality Trends in Children Adolescents and Young Adults (2000 – 2012) Estimated number of AIDS-related deaths among children aged 0–4, children aged 5-9, adolescents aged 10–19 and young people aged 20–24, 2000– 2012 Source:

5. www.aids2014.org Transition The purposeful planned movement of children with special health care needs from child- to adult-centered health care.

6. www.aids2014.org Transition Challenges: Individual Loss of emotional support and sense of belonging Cognitive Development and Mental Health Medication adherence Sexual Reproductive and Gender Health Socio-economic status Stigma and Disclosure

7. www.aids2014.org Perspectives of Adolescent and Young People Chuenkamol Sethaputra Poster_P34 “It was that I had to go and wait for blood test, picking up my medicine by myself. I was worried if the adult clinic would take very good care of me similar to the pediatric clinic or not.” (Male, aged 19 years) “I was worried that people would look at me in a negative way. Like what have happened to you, what is your illness, is it infectious, how did you get infected, why are you at this clinic.” (Male, aged 19 years) “I think they should try to understand adolescents more. We should talk and exchange opinions. It is better than when they tell us to do this and that.” (Female, aged 22 years)

8. www.aids2014.org Transition Challenges: Service related factors Radical differences in clinic cultures between pediatric/adolescent and adult care settings Communication difficulties between adolescents and adult care providers Inadequate time and resources in adult medicine practice settings Lack of knowledge of available services Difficulties navigating the adult healthcare delivery system Lack of HIV providers with expertise to treat this population

9. www.aids2014.org Perspectives of Adolescent and Young People Chuenkamol Sethaputra Poster_P34 There should be training to prepare us to be ready to go to adult clinic as we have to pick up medicine and do all other things by ourselves.” (Female, aged 19 years) “It would be good if they could arrange an adolescent clinic which is separate from other adult patients.” (Female, aged 22 years)

10. www.aids2014.org Provider perspective “ We have hardly any tools for this [communication with patients] at all, really very few… We don't see anything new like for example, how to deal with teenagers”(FGD, Provider) Tulloch O et al. (2014). PLoS ONE 9(6): e99061. doi:10.1371/journal.pone.0099061

11. www.aids2014.org Clinical considerations: PHIV Advanced stages of HIV disease and immunosuppression Complicated ART regimens More likely to have multidrug resistant virus and heavy antiretroviral exposure history History of OIs with complications and complex non-antiretroviral medications (OI prophylaxis and treatment) Greater obstacles to achieving functional autonomy

12. www.aids2014.org Clinical Considerations: BHIV More likely to be in earlier stages of HIV disease Fewer OI complications More likely to have higher CD4 counts* When ART is initiated, simpler regimens can be used Less likely to be resistant to antiretroviral drugs Fewer developmental delays than in perinatal group, which may improve treatment adherence More likely to achieve functional autonomy

13. www.aids2014.org General Principles Identify adult care providers who are willing to care of adolescents Begin the transition process early Individualize the approach used Use a multidisciplinary transition team (Doctors, Nurses, Peers who are transitioning or who have transitioned successfully) Educate Adolescents and HIV care teams and staff about transitioning Ensure communication between the pediatric/adolescent and adult care providers prior to and during transition

14. www.aids2014.org Key steps Written guidelines or procedures in place Age of transition individualized Assessing of patient readiness – Specific charting tools and/or documentation –Knowledge and skills checklist Maintaining contact during transition year

15. www.aids2014.org Program examples

16. www.aids2014.org Figure Source: Journal of Pediatric Health Care 2011; 25:16-23 (DOI:101016/j.pedhc.2009.12.005 ) Copyright © 2011 National Association of Pediatric Nurse Transition Model of Care

17. www.aids2014.org Transition Model of Care Botswana Baylor: –Clinic opened in 2003 600. –Holistic service model –No RCT, but expert opinion and scale up in Zambia, Uganda, Kenya, Swazi, Lesotho. Zimbabwe Zvandiri Program: –Bidirectional linkages community and clinics. –No RCT but expert opinion and SADC best practice

18. www.aids2014.org Gaps in Knowledge What are effective transition models in low resource settings? How to move to most effectively move adolescents towards self-management? What should be the package of services and standard of care to facilitate transition for all adolescents?

19. www.aids2014.org Conclusion Transition is a process Transition planning must address a broad range of issues of developmental, medical and psychosocial issues

20. www.aids2014.org Acknowledgements Sabrina Bakeera-Kitaka (Makerere University) Annette H Sohn, TREAT Asia/amfAR

21. www.aids2014.org Thank you