This document discusses measuring adherence within PMTCT programs. It begins by defining PMTCT as a care and treatment program for pregnant HIV-positive women and their exposed infants, noting activities occur across antenatal care, maternity wards, exposed infant clinics and HIV treatment centers. Routinely collected data only provides a general idea of adherence. New tools are needed to assess adherence at different points, like antenatal adherence and infant follow-up. These tools should reflect PMTCT as a long-term program, not just delivery. Strong systems are required to retain families in care, like functioning appointment systems and linkage between services.

1. Special issues for adherence in PMTCT Sara Riese, MIA, MPH PMTCT Program Officer Supporting Sustainable Adherence to HIV Prevention, Care & Treatment ICAP Technical Workshop October 19-22, 2009Kigali, Rwanda

2. 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?

3. PMTCT Care Spectrum

4. MTCT occurs during pregnancy, delivery and throughout the duration of breast feeding Early Postpartum (0-1 mo) Early Antenatal (<28 wks) Late Postpartum Labor and Delivery Up to 40% of transmissions can occur during breast feeding Late Antenatal (28 wks to labor) 1-6 mos 6-24 mos 0% 20% 40% 60% 80% 100% Proportion of infections

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

6. 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

7. Antepartum: PICT in ANC CD4 testing HAART Initiation AZT at 28weeks plus sd-NVP Partner Testing Intrapartum: PICT in L&D (repeat testing if prior negative test) CD4 Testing AZT/3TC tail FP Counseling AZT/NVP infant dose

8. i 1-8weeks post Partum: Maternal post partum follow-Up Enrollment into CTC FP Counseling PCR testing at 4-6weeks Growth Monitoring CTX initiation 2-6mos post partum: Repeat maternal CD4 (6mos post partum) Growth Monitoring CTX continuation IF counseling HIV infected infants: ART initiation/CD4 testing

9. 6-9mos post partum: Growth Monitoring CTX continuation Infant Feeding support 9-12 mos post partum: Growth Monitoring CTX continuation Infant feeding support Antibody testing: >3mos post BF cessation 12-18mos post partum: Antibody testing: >3mos post BF cessation Final infection status known Child discharged from PMTCT program

10. PMTCT Care Spectrum: Not yet complete

11. 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

12. 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

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

14. 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 medications Kiarie, AIDS, 2003 Baek et al, Horizons Program Evaluation, 2009 Meda et al, AIDS 2002

15. Let’s look at the data Globally ICAP supported countries

16. Low rates of antiretroviral use for PMTCT in Sub-Saharan Africa Towards Universal Access – Scaling up priority HIV/AIDS interventions in the health sector. WHO/UNAIDS/UNICEF, 10.2009

17. 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

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

19. Proportion of HIV+ pregnant women with CD4 test results among 224 PMTCT sites, ICAP, April 2008-June 2009 Mean: average proportion of HIV+ pregnant women with documented CD4 result from April 2008-March 2009 vs. latest reporting, Apr-Jun 2009

20. Can we use routinely collected data to measure PMTCT adherence?

21. Select PMTCT indicators from the URS Jun 2008-July 2009

22. 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

23. The Pearl Study: NVP coverage cascade in HIV+ Women and their infants 3244 Number of women 1839 1590 Coetzee D et al. IAS, 2009, Abs. WeLBD101

24. Few ART eligible women initiated HAART in pilot in public clinic in Lusaka, Zambia 25% of HIV+ women identified in ANC received either prophylaxis or treatment Chi B, et al. JAIDS 2007 46% of eligible started treatment 65% of non-eligible received prophylaxis

25. Special Guest Presenters CanisiousMusoni ICAP Rwanda PMTCT Program Manager AruneEstavela ICAP Mozambique PMTCT Technical Advisor

26. Adherence and linkages workshop: Kgl Oct 09Using the routinely collected data from the URS to show the rates of HEI enrollment into HEI follow-up Canisious Musoni- PMTCT program manager

28. Maternity- C&T, nutrition advise, registration of HEI and appointment system

29. HEI follow –up- Prophylaxis, EID , nutrition & growth monitoring

30. All 32 PMCT sites do offer EID services

31. Service integration : eg, FP

32. Nutrition services- weaning food program

34. After delivery: ARV prophylaxis (Sd-NVP at birth and AZT for 4 weeks) is given.

35. Registration of HEI and appointment at 6 weeks for CTP and 1st DNA testing

36. Monthly appointments for growth monitoring, CPT and further DNA and serology tests

37. At community level:

38. Community is sensitized for facility delivery and post partum care

39. 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

40. Activities at every site:

41. Growth monitoring assessment

42. Nutritional assessment and psychosocial evaluation of the mother.

43. CPT provision , biological assessment (tests) depending on the age

44. Documentation of new information

47. In-transfers from other HCs/outside catchment areas

49. 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

50. Using data from the mother- infant pair tool Arune J. Estavela Adherence Technical Meeting Date October,19-22,09 Kigali, Rwanda

51. 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)

52. Talking about adherence: what is expected

53. Expected visits during pregnancy 3rdANC 4 wks 4thANC 2 wks 5thANC 2 wks 1st ANC 2ndANC 1-2 wks Return to ANC and follow up Family Planning ART clinic visit Maternity Post partum visits Child health Exposed infant expected visits at specific follow up consultation 8 wks: PCR result: 4 wks of age: CTZ, PCR Monthly visits up to 18 months 2-7 days post partum ART Clinic or HEI follow up 4 wks: CTZ, PCR 4 wks: CTZ, PCR 4 wks: CTZ, PCR

55. Infant feeding groups

56. Mother support groups

57. Positivetea

58. Community outreach: just started this month, partnership with Pathfinder

62. Looking for their children at “At Risk Children Clinic” (ARCC) using the tool

63. 11/20 (55%) mother and children pairs were found (between ANC and ARCC)

64. 8/11 (72%) children had documented 6 week outcomes

65. Slight decrease after the 1st visit

68. Regular technical support for peer educators on counseling issues to ensure quality, confidentiality and friendly environment

69. In October, pilot comprehensive exercise in Maputo city to follow monthly cohort:

70. Mother – infant pairs between ANC and ARCC

71. Linkages between ANC and ART clinic

72. Linkages between ARCC and ART pediatric clinic

74. 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

76. 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)

77. 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

78. 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

79. 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

80. 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

81. Special Thanks to: Elaine Abrams Fatima Tsiouris Robin Flam Rosalind Carter All ICAP PMTCT Country programs