Adherence to PMTCT: Plenary


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  • To start off, I want to make sure that we’re all thinking about PMTCT in the same way. PMTCT is a package of care services that starts during pregnancy and lasts all the way until the exposed infant has a final infection status and is discharged from the PMTCT program. This graphic shows all of the biomedical interventions that need to happen at each time period.
  • What are the take away messages from this PMTCT Care spectrum?We need to shift our thinking, reconceptualize what we mean by PMTCT.
  • Let’s review..What are some of the apss activities which would support adherence to these activities? Ask audience, give examples.Antepartum activities: Adherence counseling on PMTCT prophylaxis, targeted counseling for GA, support groups, peer educators, tracking and tracing plan that worksIntrapartum activities: Counseling during pregnancy on birth plan (where and how), apss support in labor ward for immediate postpartum support
  • Postpartum:For mom-support groups, especially around infant feeding and EID results, systems to ensure her engagement with CTC for her own healthInfant: systems that ensure follow-up in missed appts.
  • It is necessary that adherence and psychosocial support activities endure over a long period of time after delivery, not just in the immediate pp period
  • Now that we’re thinking about the PMTCT as this whole spectrum, a “package of care”, I’d like to hear your thoughts on adherence to this package. In looking at this spectrum, where do you think the biggest pt losses (in terms of ltfu)occur?One of the reasons why there are still so many children who acquire HIV from MTCT is because there has been a failure to implement this entire spectrum of interventions. But this spectrum does not reflect the psychosocial activities which must run parallel to the biomedical interventions in order to support the mother and her family to adhere to the entire package of PMTCT care and treatment.
  • There will be a more focused discussion on this topic during the concurrent sessions, but are there ideas for what would constitute adherence to PMTCT care? Care=appointments Adherence to care would mean that every woman tested HIV+ returns for all of the necessary follow-up visits.PMTCT treatment? Treatment=the appropriate prophylaxis or treatment as determined eligible for both mom and baby. Adherence to treatment would mean that every woman who initiates AZT prophylaxis or HAART during pregnancy is adherent to her meds, and that every infant given AZT syrup and CTX is given his/her meds appropriately.
  • In order to start thinking about what kinds of activities we need to implement in order to increase adherence, we need to consider the barriers.
  • (I’m going to insert the citations at the bottom)What are some of the barriers to adherence to PMTCT care (visits) that you have experienced in your countries?There is no data that I could find on barriers to follow-up visits during the postpartum period for HIV+ moms.
  • It is important to consider as well, that approximately 20% of PMTCT mothers should be eligible for treatment for their own health, so most if not all of the treatment barriers which we think about for adults on treatment would apply here as well.
  • Of the number estimated to be pregnant women living with HIV only 45% received any antiretrovirals for PMTCT and only 30% of estimated number of exposed infants were reported to have received treatment in 2008
  • Over time, the proportion of women getting a single antiretroviral for PMTCT is decreasing. This points to an increase in the proportion of women getting combination regmines, which means that we need to start thinking about how to keep women in care over time.
  • This shows the proportion of different prophylaxis regimens for PMTCT in ICAP countries.
  • This slide shows the proportion of HIV+ pregnant women with CD4 test results among 224 PMTCT sites reporting CD4 results in the past quarter as compared to the mean average over the previous year.If we include receiving CD4 test result in order to determine HAART eligibility as one of the activities on the spectrum which need to be done in our PMTCT package, then we can see that we are not achieving this. Far fewer than 100% of HIV+ pregnant women are getting their CD4 test results. Consider that ICAP has more than 600 PMTCT sites, and of those, only these 224 report having any CD4 test results on a pregnant woman.
  • Elaine: Tell me what you think of this slide. I got these #s from the URS for the past year (from last quarter back one year). I want to show a slide with many of the elements of the spectrum which are URS indicators in order to make the point that although it looks like we can follow a trend of adherence, really we cant. But if you think the #s look funny still, I can try and think of another way to do it.I CAN’T SPEAK TO THIS SLIDE AS I DON’T KNOW HOW THEY GOT THE DATA FOR MOST OF THE INDICATORS. I THINK TOO MANY WOMEN ARE IDENTIFIED HERE AS HAVING HAD A CD4 , ETC BUT YOU COULD SHOW IT AND QUALIFY THAT THE DATA ARE TAKEN FROM DIFFERENT PLACES AND ARE ILLUSTRATIVE.
  • Let’s look at how some studies have measured adherence in PMTCT:The PEARL study did an evaluation of adherence to sd-NVP, the minimum intervention for PMTCT. At each step along the cascade-with documentation and programmatic activities-women were lost and ultimately the intervention was not adhered to and only 49% of mother-infant couples received NVP.
  • A simple data collection instrument to abstract routinely collected mother and infant care information from facility registers (ANC and ARCC)The tool consisted of a single sheet, divided into mother and infact sectionAll variables registered ( patient charts) included routine antenatal care components as well as HIV care and treatment, partner testing and maternal post partum follow up
  • I deleted the data from Maputo. We can discuss about it before the presentation.55% of the mothers registered their babies at the infant clinic: show good linkages between services and good adherence to follow up.8 babies/11 (72%) had documented 6 weeks infant outcomes. 7/8 ( 87.5%) had PCR negative result and 1/8 (12.5%) had PCR result positive
  • So to review, how can our programs measure PMTCT adherence….
  • Best ways to measure adherence require going to the registers…and then feeding back information to the sites so that they can apply the information to their activities to improve
  • The toolsreflect this new approach to PMTCT that we’ve been exploring. The mother-infant pair tool looks one mom and her baby over the time that they should be receiving care and treatment and looks at adherence to the overall package for the mom-baby couple.And the other tools evaluate adherence to specific parts of the pmtct spectrum-prophylaxis for mom and baby, and linkages with the care and treatment clinics for both mom and baby. These tools go into more detail and can help identify at what point in, for example, prophylaxis provision in ANC, or at what point in the referral to CTC for an HIV+ infant, are we losing patients.BUT the tools only tell us how we are doing. They don’t tell us how we can achieve improved adherence.
  • In order to think about how we can actually improve adherence, let’s first review what is new and different a bout this new way of thinking about PMTCT?
  • We’ve encountered many of these same issues in the ART roll-out, and can apply many of the lessons learned from our experiences there to PMTCT.
  • Adherence to PMTCT: Plenary

    1. 1. Special issues for adherence in PMTCT<br />Sara Riese, MIA, MPH<br />PMTCT Program Officer<br />Supporting Sustainable Adherence to HIV Prevention, Care & Treatment<br />ICAP Technical Workshop<br />October 19-22, 2009Kigali, Rwanda<br />
    2. 2. Overview<br />What do we mean when we talk about PMTCT? What about PMTCT adherence?<br />What are some barriers to adherence in PMTCT programs?<br />How can we measure PMTCT adherence?<br />What activities and systems can help strengthen PMTCT adherence?<br />
    3. 3. PMTCT Care Spectrum<br />
    4. 4. MTCT occurs during pregnancy, delivery and throughout the duration of breast feeding<br />Early Postpartum<br />(0-1 mo)<br />Early Antenatal<br />(&lt;28 wks)<br />Late Postpartum<br />Labor and <br />Delivery<br />Up to 40% of transmissions <br />can occur during breast feeding<br />Late Antenatal<br />(28 wks to labor)<br />1-6 mos<br />6-24 mos<br />0%<br />20%<br />40%<br />60%<br />80%<br />100%<br />Proportion of infections<br />
    5. 5. The possibility of mother-to-child transmission does not end at delivery, so our prevention activities must not end there!<br />
    6. 6. Take home message: Re-conceptualize PMTCT<br />PMTCT does not end at delivery<br />There are 2 people involved (mother-child)<br />Activities occur in different service areas (ANC, Maternity, Exposed Infant Clinic, Care and Treatment Clinic)<br />Is a care and treatment program for pregnant HIV positive women that links them and their families into lifelong HIV care and treatment<br />
    7. 7. Antepartum:<br />PICT in ANC<br />CD4 testing<br />HAART Initiation<br />AZT at 28weeks plus sd-NVP<br />Partner Testing<br />Intrapartum:<br />PICT in L&D (repeat testing if prior negative test)<br />CD4 Testing <br />AZT/3TC tail<br />FP Counseling<br />AZT/NVP infant dose<br />
    8. 8. i<br />1-8weeks post Partum:<br />Maternal post partum follow-Up <br />Enrollment into CTC<br />FP Counseling<br />PCR testing at 4-6weeks<br />Growth Monitoring<br />CTX initiation<br />2-6mos post partum:<br />Repeat maternal CD4 (6mos post partum)<br />Growth Monitoring<br />CTX continuation<br />IF counseling<br />HIV infected infants: ART initiation/CD4 testing<br />
    9. 9. 6-9mos post partum:<br />Growth Monitoring<br />CTX continuation<br />Infant Feeding support<br />9-12 mos post partum:<br />Growth Monitoring<br />CTX continuation<br />Infant feeding support<br />Antibody testing: &gt;3mos post BF cessation<br />12-18mos post partum:<br />Antibody testing: &gt;3mos post BF cessation<br />Final infection status known<br />Child discharged from PMTCT program<br />
    10. 10. PMTCT Care Spectrum: Not yet complete<br />
    11. 11. Food for thought: What is PMTCT adherence?<br />If this whole spectrum of activities is the Package of PMTCT, then how would we define adherence to PMTCT?<br />To PMTCT Care <br />To PMTCT Treatment<br />
    12. 12. Special barriers to consider for PMTCT<br />Review of the existing literature on specific barriers to adherence for HIV + pregnant and post-partum women and their infants<br />
    13. 13. Barriers to PMTCT Care adherence(PMTCT visits after positive test result)<br />Fear of stigma and discrimination <br />Lack of knowledge and understanding of PMTCT interventions <br />Focus only on the infant, not on the mother<br />Lack of spousal or family support <br />Long wait times at ANC <br />Associated costs <br />Negative interactions with Health Care Workers<br />Bwirire et al, Transactions of the Royal Society of Tropical Medicine and Hygiene , 2008<br />Meda et al, AIDS, 2002<br />Peltzer et al, African journal of Reproductive Health, 2007<br />Kebaabetswe et al, AIDS Care 2007<br />
    14. 14. Barriers to PMTCT treatment adherence(PMTCT prophylaxis for mom and baby) <br />Women <br />Being away from home without medication<br />Running out of pills<br />Fear of mistreatment (especially for facility delivery)<br />Non-disclosure/hiding medications<br />Infants<br />Not understanding how to give the syrups<br />Being away from home<br />Being busy<br />Non-disclosure/hiding medications<br />Kiarie, AIDS, 2003<br />Baek et al, Horizons Program Evaluation, 2009<br />Meda et al, AIDS 2002<br />
    15. 15. Let’s look at the data<br />Globally<br />ICAP supported countries<br />
    16. 16. Low rates of antiretroviral use for PMTCT in Sub-Saharan Africa<br />Towards Universal Access – Scaling up priority HIV/AIDS interventions in the health sector. WHO/UNAIDS/UNICEF, 10.2009 <br />
    17. 17. Percentage distribution of ART regimens for pregnant women <br />Towards Universal Access – Scaling up priority HIV/AIDS interventions in the health sector. WHO/UNAIDS/UNICEF, 10.2009 <br />
    18. 18. PMTCT prophylaxis and ART regimens among HIV+ women at ANC, ICAP, Jul 07 – Jun 09<br />
    19. 19. Proportion of HIV+ pregnant women with CD4 test results among 224 PMTCT sites, ICAP, April 2008-June 2009 <br />Mean: average proportion of HIV+ pregnant women with documented CD4 result from April 2008-March 2009 vs. latest reporting, Apr-Jun 2009 <br />
    20. 20. Can we use routinely collected data to measure PMTCT adherence?<br />
    21. 21. Select PMTCT indicators from the URS Jun 2008-July 2009<br />
    22. 22. No. They only give us a general sense.<br />These data do not tell us about one woman’s receipt of or adherence to care or treatment over time.<br />They tell us how many individuals were documented to have received each separate intervention in the reporting period<br />
    23. 23. The Pearl Study: NVP coverage cascade in HIV+ Women and their infants<br />3244<br />Number of women<br />1839<br />1590<br />Coetzee D et al. IAS, 2009, Abs. WeLBD101<br />
    24. 24. Few ART eligible women initiated HAART in pilot in public clinic in Lusaka, Zambia<br />25% of HIV+ women identified in ANC received either prophylaxis or treatment<br />Chi B, et al. JAIDS 2007<br />46% of eligible started treatment<br />65% of non-eligible received prophylaxis<br />
    25. 25. Special Guest Presenters<br />CanisiousMusoni<br />ICAP Rwanda PMTCT Program Manager<br />AruneEstavela<br />ICAP Mozambique PMTCT Technical Advisor<br />
    26. 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<br />Canisious Musoni- PMTCT program manager<br />
    27. 27. Introduction<br />Under PMTCT program :<br /><ul><li>ANC- C&T, CD4, prophylaxis, Linkages
    28. 28. Maternity- C&T, nutrition advise, registration of HEI and appointment system
    29. 29. HEI follow –up- Prophylaxis, EID , nutrition & growth monitoring
    30. 30. All 32 PMCT sites do offer EID services
    31. 31. Service integration : eg, FP
    32. 32. Nutrition services- weaning food program
    33. 33. Linkages and referral system- on site, away sites</li></li></ul><li>HEI follow up in Rwanda <br /><ul><li>HEI follow-up occurs at health facilities with the following package offered:
    34. 34. After delivery: ARV prophylaxis (Sd-NVP at birth and AZT for 4 weeks) is given.
    35. 35. Registration of HEI and appointment at 6 weeks for CTP and 1st DNA testing
    36. 36. Monthly appointments for growth monitoring, CPT and further DNA and serology tests
    37. 37. At community level:
    38. 38. Community is sensitized for facility delivery and post partum care
    39. 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. 40. Activities at every site:
    41. 41. Growth monitoring assessment
    42. 42. Nutritional assessment and psychosocial evaluation of the mother.
    43. 43. CPT provision , biological assessment (tests) depending on the age
    44. 44. Documentation of new information
    45. 45. Appointment for next visit</li></li></ul><li>HIE enrolment follow-up<br />
    46. 46. Data comments<br />Not easy to track cohort adherence information with URS data source<br />The number of the infants is usually greater than the number of the women who delivered due to : <br /><ul><li>Time lag between births and qualifying for 1st CTP and DBS with respect to sequential reporting periods
    47. 47. In-transfers from other HCs/outside catchment areas
    48. 48. The CPT Indicator not being good as it reports all infants accessing CPT from 4 weeks and above. </li></li></ul><li>What facilitates HIE follow up?<br />Pre and post partum counselling messages regarding prophylaxis<br />Improved functioning appointment system –after birth<br />Established follow up mechanism both at the health and community<br />Synergistic working relationship btn the CHW and PE help remind/refer clients to seek healthcare in time.<br />At HC, PE facilitate client orientation , reinforce adherence messages and facilitated support group formation <br />Govt buy in and engagement<br />
    49. 49. Need for improvement<br />Harmonization of appointment schedules (eg vaccination and HIV follow up)<br />Re - enforcement of prophylaxis , EID counselling messages right way from ANC till delivery especially for discordant couples<br />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. <br />Ownership of the program by health care facilities<br />
    50. 50. Using data from the mother- infant pair tool<br />Arune J. Estavela<br />Adherence Technical Meeting<br />Date October,19-22,09<br /> Kigali, Rwanda<br />
    51. 51. Background<br />20 millions inhabitants<br />16.0% HIV prevalence<br />About 70% (~700/1000) of the <br /> MCH services offer PMTCT care<br />ICAP support about 90 PMTCT sites in<br /> 5 provinces<br />Between April to June 2009 (74 sites)<br />2809 HIV pregnant women<br />2382 exposed infant were registered at RCC (At<br /> Risk Children Consultation)<br />
    52. 52. Talking about adherence: what is expected<br />
    53. 53. Expected visits during pregnancy<br />3rdANC<br />4 wks<br />4thANC<br />2 wks<br />5thANC<br />2 wks<br />1st ANC<br />2ndANC<br />1-2 wks<br />Return to ANC and follow up<br />Family Planning<br />ART clinic visit<br />Maternity <br />Post partum visits<br />Child health <br />Exposed infant expected visits at specific follow up consultation<br />8 wks: PCR result:<br />4 wks of age: CTZ, PCR<br />Monthly visits up to 18 months<br />2-7 days post partum<br />ART Clinic or HEI follow up<br />4 wks: CTZ, PCR<br />4 wks: CTZ, PCR<br />4 wks: CTZ, PCR<br />
    54. 54. What we are offering<br />Strategies to strengthen, support adherence to care:<br /><ul><li>Peer educators program: Woman who had experienced PMTCT care (29 sites) offer counseling, moral support, experience sharing. Help linkages between services.
    55. 55. Infant feeding groups
    56. 56. Mother support groups
    57. 57. Positivetea
    58. 58. Community outreach: just started this month, partnership with Pathfinder
    59. 59. Male involvement </li></li></ul><li>How we assess, follow up adherence<br />No need for sophisticated material<br />Just need some time <br />Mother-infant pair tool<br />2. Mother ANC adherence follow up tool<br />3. Cohort follow up<br />
    60. 60.
    61. 61. Results of mother-infant pair exercise<br /><ul><li>20 records of HIV positive women at ANC reviewed at 2 sites in Mozambique
    62. 62. Looking for their children at “At Risk Children Clinic” (ARCC) using the tool
    63. 63. 11/20 (55%) mother and children pairs were found (between ANC and ARCC)
    64. 64. 8/11 (72%) children had documented 6 week outcomes
    65. 65. Slight decrease after the 1st visit
    66. 66. Show how we have to take the opportunity of the 1st contact to improve counseling and care</li></li></ul><li>How to use the results to improve adherence? <br />Discussion of all adherence barriers at monthly ART technical meeting (city health directorate) <br />Technical meeting at site level to discuss results where some changes to improve linkages were decided:<br />Review correct register of mother´s unique MCH ID or ART<br />Discuss involvement of peer educators within MCH services: accompany women between services<br />Improve identification of HIV+ women or exposed children: PICT at PP and FP point of contact and at healthy babies clinic in one site<br />Implement infant feeding group to improve nutritional education and adherence to care (one site)<br />Outreach program started in collaboration with Pathfinder using peer educators<br />
    67. 67. Next steps<br /><ul><li>Strengthen community out-reach
    68. 68. Regular technical support for peer educators on counseling issues to ensure quality, confidentiality and friendly environment
    69. 69. In October, pilot comprehensive exercise in Maputo city to follow monthly cohort:
    70. 70. Mother – infant pairs between ANC and ARCC
    71. 71. Linkages between ANC and ART clinic
    72. 72. Linkages between ARCC and ART pediatric clinic
    73. 73. Based on feasibility and usefulness, will be expanded to all provinces to support adherence follow up and data sharing for action at site level </li></li></ul><li>Obrigado<br /> Murakoze<br />
    74. 74. How can our programs measure PMTCT adherence?<br />Routinely collected data<br />For a general idea<br />Specifically designed tools to look at adherence at different points in the spectrum<br />Mother PMTCT adherence tool<br />PMTCT-CTC linkage assessment tool<br />HEI follow-up adherence tool<br />HIV+ infant-CTC linkage assessment tool<br />Mother-Infant Pair tool<br />
    75. 75.
    76. 76. Tools reflect the re-conceptualization of PMTCT<br />Mother-Infant Pair Tool<br />PMTCT does not end at delivery!<br />Both mom and baby are involved<br />Activities occur in different service areas (ANC, Maternity, Exposed Infant Clinic, Care and Treatment Clinic)<br />Adherence assessments (Antenatal PMTCT and HEI follow-up)<br />PMTCT as a care and treatment program for pregnant and postpartum HIV+ women and their exposed infants<br />Linkage assessments (Antenatal PMTCT-CTC, HEI-CTC)<br />Activities occur in different service areas (ANC, Maternity, Exposed Infant Clinic, Care and Treatment Clinic)<br />
    77. 77. What is different about this new way of thinking about PMTCT?<br />PMTCT does not end at delivery: Postpartum period is included in the PMTCT spectrum<br />Multiple visits over time<br />ART eligibility assessment and initiation during pregnancy and post partum period<br />Linkages between service areas<br />
    78. 78. How can we achieve it?<br />Apply lessons learned from the ART roll-out<br />Provide optimal biomedical interventions<br />Create, develop and implement systems to retain women, their infants and their families in long-term follow-up<br />Strengthen maternal-child health services<br />Traditionally under-resourced health system for women and young children<br />Attend to community and service delivery barriers<br />
    79. 79. Priority Systems to put in place<br />Functioning appointment systems which catch missed appointments and a system to track and trace patients<br />Limited time during pregnancy<br />Appts in different service areas<br />Adherence assessments with a counseling framework<br />
    80. 80. Other PMTCT-specific activities to consider implementing<br />Psychosocial support for moms and families<br />Strengthened linkage systems <br />For mom<br />For baby<br />Between mom and baby<br />Encouraging systems that reflect the vision of the PMTCT spectrum<br />
    81. 81. Special Thanks to:<br />Elaine Abrams<br />Fatima Tsiouris<br />Robin Flam<br />Rosalind Carter<br />All ICAP PMTCT Country programs<br />