AIDS 2012 - Turning the Tide Together

Transitioning care, support, and treatment

services for ALHIV: Evidence on Transition

Melissa SharerAIDSTAR-One

An estimated 2 million adolescents aged 10 - 19 were living with HIV in 2009, 65% of

them adolescent girls

UNICEF-2012

Progress strong, the future is hopeful.

Perinatally infected:• Fast Progressors-64% median

survival 6-7 months• Slow Progressors-36% median

survival age 16 WITHOUT treatment

• Those on trx are also expected to live longer

2.7 Million

Estimates on ALHIV in SSA

1.2 MillionYouth 15-24 Living with HIV

Adolescents 10-19 Living with HIV

Vertically Infected

Behaviorally Infected

?

Sources: UA & OIC - 2011 UNICEF-2012

Perinatally vs. Behaviorally

Perinatally Infected Behaviorally InfectedAdvanced stages of HIV Earlier stages of HIV More OI’s Fewer OIsMore complex ART regimens Less likely to need ART and less resistance

More obstacles for self-management Less likely to experience obstacles

More physical/developmental delays Less likely to have physical/developmental delays

Higher risks of complications during pregnancy and more SRH fears

Lower number of complications during pregnancy

Higher mortality rates Long-term chronic disease outlookMay not know HIV status though may have been in treatment

May experience more adherence challenges

More likely to have experienced multiples losses related to HIV (parents, siblings, etc.)

More likely to have denial and fear of HIV

More secrecy regarding disclosure More likely to be misinformed on HIVMore likely to have support from family/caregiver and health provider

More likely to lack familial, clinical, and social supports

Care and Support Needs

Perinatally Infected Behaviorally Infected HIV Negative Adolescents

Access to HIV testing and counseling

All All All

Access to SRH All All All

Disclosure (self & others)

All All None

Psycho-social support All All All

Stigma (self & others) All All Some

HIV prevention All All All

Access to HIV care All Some Some

Access to prevention to mother to child transmission (PMTCT)

All All All

Access to ART All Some None

Adherence All Some None

Transition of HIV care All All None

However NEEDS are similar

• Barrier: Stigma • Barrier: Grief, loss, and bereavement • Barrier: Beneficial Disclosure (WHO 2011)• Barrier: SRH• Barrier: Substance Use (?)• Barrier: Mental Health and Neurocognitive (?)• Barrier: Family care models• Barrier: Providers sensitive to family and youth• Barrier: Focus on self management throughout

Transition must address:

Adolescence a time of physical and mental transition

• May have no physical move, but mentally adolescent is a time of great growth and change

• “a multifaceted, active process that attends to the medical, psychological, and educational or vocational needs of adolescents as they move from the child focused to the adult focused health care ”

-(Reiss and Gibson 2002, pg 1309)

• Counseling and Testing

• Family/caregiver COUNSELING and TESTING and PICT is a key way to catch this group earlier.

However key concerns remain….consent, counseling, and confidentiality.

Barrier: Knowing your status!

Reaching Adolescents through Testing

Age of Consent for testing without parental consent:

 Uganda - 12 years

South Africa – 12 yearsRwanda – 15 years

Zimbabwe – 16 yearsMalawi – 16 years

Namibia – 18 yearsMozambique – 18

Tanzania - 18Botswana – 18 years

Current: WHO Developing Guidance now to help improve diagnosis and timely initiation into care and treatment for adolescents living with HIV.

How: The Evidence

• 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. • SA Collaborative HIV adolescent MH program (CHAMP)

– Multi-country model that builds social networks and peer support to strengthen autonomy.

– RCT showing strengthened protective factors associated with less-risky behaviors for adolescents (Bell 2008).

• Zimbabwe Zvandiri Program: – Bidirectional linkages community and clinics. – No RCT but expert opinion and SADC best practice

Zimbabwe Zvandiri ProgrammeCommunity care and support for HIV-positive children and adolescentsClinical care: Diagnosis Monitoring Management of

opportunistic infections Counseling ART Prevention of mother-to-

child transmission

Community care: Support groups: psychosocial support, counseling, positive

living education, nutrition, gardens, treatment literacy Community outreach: psychosocial support, counseling,

home-based care, positive living education, child tracing, treatment literacy, caregiver training, adolescent sexual and reproductive health

Adherence supporters: psychosocial support, counseling, home-based care, positive living education, child tracing, treatment literacy

Support and training center: psychosocial support; counseling; home-based care; positive living education; adolescent-led psychosocial support training; adolescent-led information, education, and communication materials; recreation activities; skills training; education and medical assistance

MOHCW City Health Private Clinics

Zvandiri Community Care and Support Model

So….

• How to minimize barriers?

• How to move towards self-management?

• How to identify and integrate a service package into standard care?

PEPFAR’s Response via Africa Bureau

– POLICY: Technical Brief- Broad overview of care for adolescents while transitioning

• July 2012– PRACTICE: A Transition Toolkit: Focus on

increasing QoC and holistic care for ALHIV • Forthcoming via Pilot in Kenya, Zambia,

Mozambique– SOUTH TO SOUTH SHARING: Workshop to

share country experience, to have youth participation/leadership, to finalize TB & TK

• February 2012

Phase one: The provider begins to discuss the transition process with the client and caregiver using the Comprehensive Transition Checklist to review the self-care progress of the adolescent.

Phase two: The client and caregiver meet with the provider and discuss the Comprehensive Transition Checklist within the context of improving self-care, medication independence, and adherence, etc.

Phase three: The client has the first checkup without the caregiver at the clinic. The provider and client use the Comprehensive Transition Checklist to review self-care goals that include medication independence, adherence, etc.

Phase four: Constant communication and regular follow-up with community care providers that include psychosocial support, mental health, sexual and reproductive health services, disclosure, etc.

Transition Model of Care(adapted from Movin’ Out Model, Maturo et al., 2011)

Comprehensive Transition Checklist

Comprehensive transition checklist Expected age range

Discussed (√)

Goal for completio

n

Goal completed? (Y/N)

If goal not completed,

new goal date

Goal completed

? (Y/N)Notes

Interact directly with the health care team and ask questions. Below 11

Identify symptoms of grief, and has identified person who they can speak with when grieving. Below 11

Verbalize the names and dosages of medications. 11–14

Explain sexually transmitted infections, including transmission and prevention. 11–14

Explain implications of HIV diagnosis on pregnancy. 11–14

Take medication independently and is adherent to medications. 15–24

Independently makes appointments. 15–24

HOPE going forward into transition….

“Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible.”

-St Francis of Assissi