www.aids2014.org of wings and roots: transitioning adolescents with hiv infection to adult care...
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Of Wings And Roots: Transitioning Adolescents With
HIV Infection To Adult Care
Dorothy Mbori-Ngacha UNICEF (East and Southern Africa)
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Outline
• Background• Adolescent transition
– Individual factors– Service related factors– Clinical considerations
• Programmatic considerations• Conclusion
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Adolescents Living With HIVRegion Number of adolescents
living with HIV (2012)East and Southern Africa 1,300 000West and Central Africa 390,000Middle East and North Africa 17,000South Asia 130,000East Asia and the Pacific 110,000Latin America & the Caribbean 81,000Central & Eastern Europe; and the Commonwealth of Independent States
22,000
GLOBAL 2,100,000
Source: UNICEF analysis of unpublished UNAIDS 2012 HIV & AIDS estimates
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AIDS-Related Mortality Trends in Children Adolescents and Young
Adults (2000 – 2012)
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 20120
50,000
100,000
150,000
200,000
250,000
Children aged 0–4 Children aged 5–9Adolescents aged 10-19 Young people aged 20–24
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:
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Transition
Paediatrics Adolescents Adults
The purposeful planned movement of children with special health care needs from child- to adult-centered health care.
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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
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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)
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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
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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)
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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
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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
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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
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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
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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
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Program examples
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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
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Transition Model of Care
• Botswana Baylor: – Clinic opened in 2003 <30 adolescents, now
>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
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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?
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Conclusion
• Transition is a process• Transition planning must address a broad
range of issues of developmental, medical and psychosocial issues
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Acknowledgements
• Sabrina Bakeera-Kitaka (Makerere University)• Annette H Sohn, TREAT Asia/amfAR
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Thank you