SPECIAL ISSUES FOR ADHERENCE IN PMTCTSara Riese, MIA, MPH

PMTCT Program Officer

Supporting Sustainable Adherence to HIV Prevention, Care & TreatmentICAP Technical WorkshopOctober 19-22, 2009Kigali, Rwanda

Overview

What do we mean when we talk about PMTCT? What about PMTCT adherence?

What are some barriers to adherence in PMTCT programs?

How can we measure PMTCT adherence?

What activities and systems can help strengthen PMTCT adherence?

PMTCT Care Spectrum

MTCT occurs during pregnancy, delivery and throughout the duration of breast feeding

0% 20% 40% 60% 80% 100%

Early Antenatal(<28 wks)

Late Antenatal(28 wks to

labor)

Labor and

Delivery

Late Postpartum

Early Postpartum

(0-1 mo)

Proportion of infections

1-6 mos 6-24 mos

Up to 40% of transmissions can occur during breast feeding

The possibility of mother-to-child transmission does not end at delivery, so our prevention activities must not end there!

Take home message: Re-conceptualize PMTCT

PMTCT does not end at delivery There are 2 people involved (mother-

child) Activities occur in different service areas

(ANC, Maternity, Exposed Infant Clinic, Care and Treatment Clinic)

Is a care and treatment program for pregnant HIV positive women that links them and their families into lifelong HIV care and treatment

Antepartum:PICT in ANCCD4 testing

HAART InitiationAZT at 28weeks

plus sd-NVPPartner Testing

Intrapartum:PICT in L&D (repeat

testing if prior negative test)CD4 Testing AZT/3TC tail

FP CounselingAZT/NVP infant dose

i

1-8weeks post Partum:

Maternal post partum follow-Up Enrollment into

CTCFP Counseling

PCR testing at 4-6weeksGrowth

MonitoringCTX initiation

2-6mos post partum:

Repeat maternal CD4 (6mos post

partum)Growth MonitoringCTX continuation

IF counselingHIV infected infants: ART

initiation/CD4 testing

6-9mos post partum:

Growth MonitoringCTX continuation

Infant Feeding support

9-12 mos post partum:

Growth MonitoringCTX continuation

Infant feeding supportAntibody testing: >3mos post BF

cessation

12-18mos post partum:

Antibody testing: >3mos post BF

cessationFinal infection status known

Child discharged from PMTCT

program

PMTCT Care Spectrum: Not yet complete

Food for thought: What is PMTCT adherence?

If this whole spectrum of activities is the Package of PMTCT, then how would we define adherence to PMTCT? To PMTCT Care To PMTCT Treatment

Special barriers to consider for PMTCT

Review of the existing literature on specific barriers to adherence for HIV + pregnant and post-partum women and their infants

Barriers to PMTCT Care adherence(PMTCT visits after positive test result)

Fear of stigma and discrimination Lack of knowledge and understanding of

PMTCT interventions Focus only on the infant, not on the

mother Lack of spousal or family support Long wait times at ANC Associated costs Negative interactions with Health Care

WorkersBwirire et al, Transactions of the Royal Society of Tropical Medicine and Hygiene , 2008Meda et al, AIDS, 2002Peltzer et al, African journal of Reproductive Health, 2007Kebaabetswe et al, AIDS Care 2007

Barriers to PMTCT treatment adherence(PMTCT prophylaxis for mom and baby)

Women Being away from home without medication Running out of pills Fear of mistreatment (especially for facility

delivery) Non-disclosure/hiding medications

Infants Not understanding how to give the syrups Being away from home Being busy Non-disclosure/hiding medicationsKiarie, AIDS, 2003

Baek et al, Horizons Program Evaluation, 2009Meda et al, AIDS 2002

Let’s look at the data

Globally ICAP supported countries

Low rates of antiretroviral use for PMTCT in Sub-Saharan Africa

05

101520253035404550

Percentage of pregnant women living with HIV receiving antiretrovirals for PMTCT

Percentage of HIV exposed infants receiving antiretrovirals for

prophylaxis

2004

2005

2006

2007

2008

Towards Universal Access – Scaling up priority HIV/AIDS interventions in the health sector. WHO/UNAIDS/UNICEF, 10.2009

Percentage distribution of ART regimens for pregnant women

Towards Universal Access – Scaling up priority HIV/AIDS interventions in the health sector. WHO/UNAIDS/UNICEF, 10.2009

PMTCT prophylaxis and ART regimens among HIV+ women at ANC, ICAP, Jul 07 – Jun 09

Cote d'Ivoire Ethiopia Lesotho Mozambique Nigeria Rwanda South Africa Tanzania0

2,000

4,000

6,000

8,000

10,000

12,000

14,000

Sd-NVP Complex regimens HAART No prophylaxis

Proportion of HIV+ pregnant women with CD4 test results among 224 PMTCT sites, ICAP, April 2008-June 2009

Cote d'Ivoire Ethiopia Lesotho Mozambique Nigeria Rwanda South Africa0%

20%

40%

60%

80%

100%

Mean Apr-Jun 09

Mean: average proportion of HIV+ pregnant women with documented CD4 result from April 2008-March 2009 vs. latest reporting, Apr-Jun 2009

Can we use routinely collected data to measure PMTCT adherence?

Select PMTCT indicators from the URS Jun 2008-July 2009

Test

ed H

IV+ a

t 1s

t AN

C

CD4

Result

Elig

ible

for HAART

"Com

plete

" M

ater

nal P

rophyl

axis

Enro

lled in

CTC

HEI

rec

eive

d ARV P

ropyl

axis

HEI

rec

eive

d CTX

by

8 wee

ks

HEI

PCR t

este

d at an

y ag

e

0

20000

40000

60000

80000

100000

120000

140000

160000

32%

23%

34% 27%40% 37%

25%

No. They only give us a general sense.

These data do not tell us about one woman’s receipt of or adherence to care or treatment over time.

They tell us how many individuals were documented to have received each separate intervention in the reporting period

The Pearl Study: NVP coverage cascade in HIV+ Women and their infants

HIV+ D

eliver

ies

Info

in fo

lder

Offere

d Te

sting

Acce

pted

Tes

ting

Receive

d po

sitive

resu

lt

Receive

d Mat

erna

l NVP

Adhe

red

to m

ater

nal N

VP

Adhe

red

to in

fant

NVP

0

1000

2000

3000

NVP coverage = 49%

Num

ber

of

wom

en

Coetzee D et al. IAS, 2009, Abs. WeLBD101

3244

18391590

Few ART eligible women initiated HAART in pilot in public clinic in Lusaka, Zambia

Chi B, et al. JAIDS 200746% of eligible started treatment

65% of non-eligible received prophylaxis

25% of HIV+ women identified in ANC received either prophylaxis or treatment

Special Guest Presenters

Canisious Musoni ICAP Rwanda PMTCT Program Manager

Arune Estavela ICAP Mozambique PMTCT Technical Advisor

ADHERENCE AND LINKAGES WORKSHOP: KGL OCT 09

USING THE ROUTINELY COLLECTED DATA FROM THE URS TO SHOW THE RATES OF HEI

ENROLLMENT INTO HEI FOLLOW-UP

Canisious Musoni- PMTCT program manager

Introduction

Under PMTCT program : ANC- C&T, CD4, prophylaxis, Linkages Maternity- C&T, nutrition advise, registration

of HEI and appointment system HEI follow –up- Prophylaxis, EID , nutrition &

growth monitoring All 32 PMCT sites do offer EID services Service integration : eg, FP Nutrition services- weaning food program Linkages and referral system- on site, away

sites

HEI follow up in Rwanda

HEI follow-up occurs at health facilities with the following package offered: After delivery: ARV prophylaxis (Sd-NVP at birth and AZT for 4 weeks) is

given. Registration of HEI and appointment at 6 weeks for CTP and 1st DNA testing Monthly appointments for growth monitoring, CPT and further DNA and serology

tests

At community level: Community is sensitized for facility delivery and post partum care Peer Educators work with C H W/ leaders to remind women and children

obey appointment schedules . Social events are usually used as forum to pass health messages

Activities at every site:

Growth monitoring assessment Nutritional assessment and psychosocial evaluation of the mother. CPT provision , biological assessment (tests) depending on the age Documentation of new information Appointment for next visit

HIE enrolment follow-up

Q 1- 08 Q2-08 Q3-08 Q4-08 Q1-09 Q2-090

50

100

150

200

250

300

# of positive women who delivered

# HIE > 4wks initiating CTP

Tested for PCR 1

Data comments

Not easy to track cohort adherence information with URS data source

The number of the infants is usually greater than the number of the women who delivered due to :

Time lag between births and qualifying for 1st CTP and DBS with respect to sequential reporting periods

In-transfers from other HCs/outside catchment areas

The CPT Indicator not being good as it reports all infants accessing CPT from 4 weeks and above.

What facilitates HIE follow up? Pre and post partum counselling

messages regarding prophylaxis Improved functioning appointment system

–after birth Established follow up mechanism both at

the health and community Synergistic working relationship btn the

CHW and PE help remind/refer clients to seek healthcare in time.

At HC, PE facilitate client orientation , reinforce adherence messages and facilitated support group formation

Govt buy in and engagement

Need for improvement

Harmonization of appointment schedules (eg vaccination and HIV follow up)

Re - enforcement of prophylaxis , EID counselling messages right way from ANC till delivery especially for discordant couples

Having an established M&E system that works with the rest of the units. In Rwanda, from e-data base, the data manager can easily retrieve the number of those missing their appointments. Then, worker or nurse can send PE out bring them back.

Ownership of the program by health care facilities

Using data from the mother- infant pair tool

Arune J. Estavela

Adherence Technical Meeting

Date October,19-22,09 Kigali, Rwanda

Background

20 millions inhabitants 16.0% HIV prevalence About 70% (~700/1000) of the

MCH services offer PMTCT care ICAP support about 90 PMTCT sites in

5 provinces Between April to June 2009 (74 sites)

2809 HIV pregnant women 2382 exposed infant were registered at RCC (At

Risk Children Consultation)

Talking about adherence: what is

expected

Expected visits during pregnancy

1st ANC

Exposed infant expected visits at specific follow up

consultation

2-7 days post partum

4 wks of age: CTZ, PCR

ART clinic visit

Return to ANC and follow up

Maternity

Post partum visits

Child health

2nd ANC1-2 wks

5thANC2 wks

3rd ANC4 wks

8 wks: PCR result:

ART Clinic or HEI follow up

Family Planning

4th ANC2 wks

Monthly visits up to 18 months

What we are offering

Strategies to strengthen, support adherence to care:• Peer educators program: Woman who had

experienced PMTCT care (29 sites) offer counseling, moral support, experience sharing. Help linkages between services.

• Infant feeding groups• Mother support groups• Positivetea• Community outreach: just started this month,

partnership with Pathfinder• Male involvement

How we assess, follow up adherence

No need for sophisticated material Just need some time

1. Mother-infant pair tool

2. Mother ANC adherence follow up tool

3. Cohort follow up

Results of mother-infant pair exercise

20 records of HIV positive women at ANC reviewed at 2 sites in Mozambique Looking for their children at “At Risk Children

Clinic” (ARCC) using the tool 11/20 (55%) mother and children pairs were

found (between ANC and ARCC) 8/11 (72%) children had documented 6 week

outcomes Slight decrease after the 1st visit Show how we have to take the opportunity of the

1st contact to improve counseling and care

How to use the results to improve adherence?

Discussion of all adherence barriers at monthly ART technical meeting (city health directorate)

Technical meeting at site level to discuss results where some changes to improve linkages were decided:Review correct register of mother´s unique MCH ID or ART

Discuss involvement of peer educators within MCH services: accompany women between services

Improve identification of HIV+ women or exposed children: PICT at PP and FP point of contact and at healthy babies clinic in one site

Implement infant feeding group to improve nutritional education and adherence to care (one site)

Outreach program started in collaboration with Pathfinder using peer educators

Next steps

Strengthen community out-reach Regular technical support for peer educators on

counseling issues to ensure quality, confidentiality and friendly environment

In October, pilot comprehensive exercise in Maputo city to follow monthly cohort: Mother – infant pairs between ANC and ARCC Linkages between ANC and ART clinic Linkages between ARCC and ART pediatric clinic

Based on feasibility and usefulness, will be expanded to all provinces to support adherence follow up and data sharing for action at site level

Obrigado Murakoze

How can our programs measure PMTCT adherence?

Routinely collected data For a general idea

Specifically designed tools to look at adherence at different points in the spectrum Mother PMTCT adherence tool PMTCT-CTC linkage assessment tool HEI follow-up adherence tool HIV+ infant-CTC linkage assessment tool Mother-Infant Pair tool

Tools reflect the re-conceptualization of PMTCT

Mother-Infant Pair Tool PMTCT does not end at delivery! Both mom and baby are involved Activities occur in different service areas (ANC, Maternity,

Exposed Infant Clinic, Care and Treatment Clinic) Adherence assessments (Antenatal PMTCT and HEI

follow-up) PMTCT as a care and treatment program for pregnant and

postpartum HIV+ women and their exposed infants Linkage assessments (Antenatal PMTCT-CTC, HEI-CTC)

Activities occur in different service areas (ANC, Maternity, Exposed Infant Clinic, Care and Treatment Clinic)

What is different about this new way of thinking about PMTCT?

PMTCT does not end at delivery: Postpartum period is included in the PMTCT spectrum

Multiple visits over time ART eligibility assessment and initiation

during pregnancy and post partum period

Linkages between service areas

How can we achieve it?

Apply lessons learned from the ART roll-out Provide optimal biomedical interventions Create, develop and implement systems to

retain women, their infants and their families in long-term follow-up

Strengthen maternal-child health services Traditionally under-resourced health system for

women and young children Attend to community and service delivery

barriers

Priority Systems to put in place Functioning appointment systems which

catch missed appointments and a system to track and trace patients Limited time during pregnancy Appts in different service areas

Adherence assessments with a counseling framework

Other PMTCT-specific activities to consider implementing

Psychosocial support for moms and families

Strengthened linkage systems For mom For baby Between mom and baby

Encouraging systems that reflect the vision of the PMTCT spectrum

Special Thanks to:

Elaine Abrams Fatima Tsiouris Robin Flam Rosalind Carter All ICAP PMTCT Country programs