H I V / A I D SDEPARTMENT
Rachel BaggaleyEyerusalem Negussie
Andrew Ball
Starting and staying the course: HIV linkage and retention in care
Improving retention at all points along the cascade: the WHO perspective
Retention in HIV care – the leaky cascade
Not assessed
HIV+ population
ART eligible
Not yet ART eligible
Initiate ART
Tested
Not tested
Assessed
Retained through
first year
Lost before ART
initiation
Lost in first year
Retained through ≈5
years
Lost by 5 years
Retained 5-30+ years
Lost after 5 years
Pre-ART care until ART
eligible
From testing to treatment initiation
Lifelong retention on treatment
Testing
The leakiest leak
Up to 95% patients lost in
pre-ART period
Who
kno
ws!
Lim
ited
data
for A
RT fo
r
trea
tmen
t. N
o da
ta fo
r Tas
P or
PM
TCT
B
+
Onl
y 40
% k
now
Lost before ART eligible
AntenatalPostnatal/
BreastfeedingLonger term
ANC booking
ANC visits
Delivery
Postnatal MCH visits – FP, immunisation, etc.
6/52 check
HIV test
CD4
Initiate ART Monitor ART
18m check
0M 12M 18M
Retention on ART
Retention in MCH
Retention in PMTCT programmes – even more complex
Why the leaks? Findings from a WHO e-survey of 20+ countries:
• Step 0 – testing– Psychological – lack of perceived benefits, stigma, discrimination, fears, denial– Health service – lack of easy access/opportunity for men, adolescents, and key populations
• Step 1 – testing to enrolment in care– Psychosocial – stigma, denial of +ve status, "not ready to accept diagnosis/embark on life long care"– Health service – poor links/referrals from testing to services, no/limited/poor/ counselling post diagnosis
• Step 2 – enrolment in care to eligibility testing– Health service – delays in receiving CD4/lack of CD4 testing, crowded clinics, distances to clinics– Psychosocial – lack of understanding/information – especially among those feeling well
• Step 3 – eligibility to initiation on ART– Death – technically not LFU…– Psychosocial – lack of support, non-disclosure, fear of ART side effects, disbelieve in effectiveness of ART– Health service – same as above, stock outs
• Step 4 – ART start to life-long ART– Treatment-related – stopping ART because of feeling better, pill burden, and treatment fatigue – Death – especially in first year following initiation– Health Service – high # appointments → transportation costs, missed work and home responsibilities,
stock outs– Migration – Mobile populations, economic and job opportunities – Undocumented transfers (‘silent transfers’) – to other ART service providers – Continuation of care problematic for incarcerated patients– Alternative/spiritual healers – alternative health beliefs and influences
Adolescent, pregnant women, men, >50s, low CD4→ worse retention
How to plug the leaks• Better linkages from testing to care
• Accompaniers• eHealth referrals and follow up
• Doing "something" (effective and acceptable) in the pre-ART period• Define a pre-ART package• Provide a service
• Better assessment for eligibility• PoC CD4• SMS return of results
• Making services nicer, better, easier, quicker, cheaper (for patient and health system)
• Closer to home – decentralization• Easier for patients – less visits• Integrated with other health services• Task shifting and peer support
WHO – Improving retention
Retention on treatment – how are we doing on reporting?
Based on the published evidence • Good data up to 36M after ART initiation• Retention at 24M ≈ 70-80%
Variation among facilities, programmes, and populations Up to 40% of attrition – unreported deaths Up to 40% informal transfers ≈ 20% withdrawals and reported deaths
• Little known about retention at different CD4 levels, esp >350– But…low CD4 poorer 'retention'
• Little known about long-term retention– Few studies report > 3 years’ median follow up– Almost no studies report > 5 years’ median follow up– Guideline changes (new ARV regimens, earlier ART initiation, decentralization)
will likely affect retention in first year and over lifetime
WHO retention in care meeting Sept 2011Retention in HIV programmes: Defining the challenges and identifying solutionsMeeting report (13-15 September 2011, Geneva, Switzerland)http://www.who.int/hiv/pub/meetingreports/retention_programmes/en/index.html
Ezcollab retention in care site http://ezcollab.who.int/Community.aspx?c=056fa8f5-bcfcaresite
Retention meeting summary & next steps
1. Failure to link to and retain patients in care →important adverse individual & public health consequences
The first step is getting people with HIV diagnosed, as currently the majority remain unaware of their infection
The weakest link is from testing to care – many current models fail to adequately link people to care following HTC
Promotion of earlier HIV diagnosis and better linkage to care is a key aim of the new WHO strategic HTC framework
2. Patient loss to follow up is often significant in the pre-ART period A minimum package of pre-ART care and prevention services is required to provide
effective interventions and retain people at this stage
3. Adapting services that are appropriate to context and acceptable to patients, using community support structures and organizations, mobile technology and point of care
diagnostics can all support patient retention 4. Monitoring patient retention in care is currently inadequate – 3 tier reporting
systems, unique patient identifiers
5. Consensus on indicators, definition of terms and time periods would aid programme comparisons.
Extra slide
Retention rates for antiretroviral therapy at 12, 24 and 60 months for selected countries, reported to WHO (2011)
12 months 24 months 60 months 0
10
20
30
40
50
60
70
80
90
100Botswana
Brazil
Cambodia
Burundi
China
Guatemala
Namibia
Malawi
Central African Rep.
Kenya
DR Congo
Indonesia
Median
%84% 78%
72%
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