Katherine De Tolly, Cell-Life.org

1. Prevention of mother-to-child
transmission of HIV:
Study into improving follow-up
and HIV testing rates of infants
through a support package,
tracking and SMSs
10/04/01

2. What is this about?
•This study is being run in South Africa by
Cell-Life (NGO) and Rahima Moosa Hospital
•It is a randomised controlled trial
•Aims to investigate whether enhanced care,
SMSs and tracking of patients can decrease
loss-to-followup in a postpartum prevention of
mother-to-child transmission of HIV (PMTCT)
programme
10/04/01

3. Background: Cell-Life
•Founded in 2000
•Aims to find creative ways of using
technology, particularly mobile, to help the HIV
sector
•3 main projects:
• iDART: pharmacy software for ARV
dispensing
• EMIT: data collection using mobiles
• Cellphones4HIV: exploring how mobiles
can be used for HIV communications and
in the HIV sector more broadly
10/04/01

4. Background: RMMC
•RMMC = Rahima Moosa Mother & Child Hospital
•Johannesburg, South Africa
•Large, urban mother and child referral centre
•Offers up to tertiary-level care.
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5. Study rationale
•Persistent problem in PMTCT: loss to follow-up (mothers start PMTCT
but don’t follow through to completion of the programme).
•Cumulative loss to follow-up of more than 75% between initial test and
six-month postpartum visit in a district hospital setting in Malawi1.
•At RMMC:
Weeks after Percent still ‘in the Event
delivery system’
0 weeks 100% Delivery
2 weeks 50-60% Register @ RMMCH (Empilweni Clinic): Maternal CD4;
health promotion; milk; counselling; pre-test counselling
and consent for infant test
6 weeks 30-40% HIV PCR test of child
10 weeks 25-30% Get test results. Referral to treatment clinic if HIV-infected
10/04/01

6. Effects of loss to follow-up
Loss to follow-up has 2 main effects:
1. Impact indicator of vertical transmission rate (pregnant woman to infant)
can’t be calculated, which:
• Leads to poor feedback (programme planning and evaluation).
• Makes it difficult to link data with infant mortality statistics to monitor
progress towards Millenium Development Goals 4, 5 and 6 that pertain
to maternal and child health directly.
2. Mothers remain ignorant of infant’s HIV status, meaning that
• If baby is -ve, she may worry unnecessarily that her baby is HIV-
positive.
• If baby is +ve, significant risk of mortality for the few HIV-infected
infants as it has been shown that early diagnosis of HIV and treatment
are vital to reduce HIV related mortality in infants2.
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7. Study objectives
1. Assess the effect on loss to follow-up of a structured package of care for
HIV-positive women
2. Assess effect on loss to follow-up of SMS messaging and tracking (calling
women if they miss the 6- or 10- week appointments)
• For 1 and 2, the primary indicator of success (or failure) will be the rate
of loss to follow up compared to the historical study population of the
Peripartum HIV Testing Study from 20083. The desired outcome is to
significantly increase the number of women with their infants who
receive HIV test results around 10 weeks after delivery.
3. Assess perception of the SMSs
• Women’s perception of the SMSs will be assessed in order to
understand if they found the SMSs helpful and why, if they helped them
emotionally, and if the SMSs caused any problems.
10/04/01

8. Study interventions
• Package of care:
• escorting of the new mother from the antenatal ward to the HIV clinic
• formal interview
• personal introduction to staff of the infant testing clinic
• offer of additional counselling particularly infant feeding advice
• offer of counselling on coping skills with regard to a new diagnosis of
HIV in the mother.
• Tracking: If woman does not arrive for 6- or 10- week appointment, she will
be called
• SMSs: 10-week programme of SMSs:
• Motherhood support
• Exclusive feeding reminders
• Drug reminders
• New HIV-diagnosis support
• Appointment reminders
• Women can opt to get SMSs that don’t mention HIV or AIDS
• They can opt out if they want the SMSs to stop before 10 weeks.
10/04/01

9. Examples of SMSs
• Congratulations on your new baby! Don't worry if you feel scared. It's
normal around 3 days after birth to feel like crying a lot.
• With HIV you should eat at least 3 times a day + some fruit, yoghurt, sour
milk or mageu in between. If you don't have those things, don't worry - just
eat!
• Hi, remember the importance of sticking to the feeding method (breast or
formula) you chose - plz only use that one. It's so important for your baby's
health!
• Baby's medicine time! To store the drugs, just keep them at room
temperature (not in fridge) and out of the sun.
• Just a reminder about your clinic appointment tomorrow! You'll get your
baby's test results and can talk to a nurse if you need to.
10/04/01

10. Other notes on the study
• One of few (only?) randomised, controlled trials of SMS for PMTCT
• We are also using please-call-me messages (free SMS) so women can opt
out of SMSs at any time.
• Those who opt out will be surveyed to find out why.
• SMSs cost us about R10/woman (about $1.30)
• No costs incurred by women
• Recruitment started 12 April 2010.
• One of the 4 recruits already called the hospital to say thanks for the SMSs!
• Study to finish in early 2011 due to long recruitment time.
10/04/01

11. References
1 Manzi M, Zachariah R, Teck R, Buhendwa L, Kazima J, Bakali E, Firmenich P, Humblet P. High acceptability of
voluntary counseling and HIV-testing but unacceptable loss to follow up in a prevention of mother to child HIV
transmission program in rural Malawi: scaling up requires a different way of acting. Tropical Medicine and International
Health 2005;10(12):1242–1250
2 Violari A,Cotton MF, Gibb DM, Babiker AG, Steyn J, Mahdi SA, Jean-Philippe,P, McIntryre,JA, CHER Study Team.
Early antiretroviral therapy and mortality among HIV-infected infants. N Engl J Med 2008;359(21):2233-44.
3 Technau, K. Can a Routine Peri-Partum HIV Counselling and Testing Service for Women Improve Access to HIV
Prevention, Early Testing and Treatment of Children? Master’s dissertation approved in 2009 by the Faculty of Health
Sciences, University of the Witwatersrand, Johannesburg.
10/04/01

12. Contact info
If you’d like any more information like the study protocol, SMS texts etc, please
contact:
Katherine de Tolly
Cell-Life
Katherine@cell-life.org.za
10/04/01