Studies probe retention in HIV care for women who start antiretroviral treatment during pregnancy

Option B+ retention improved by active follow-up, partner disclosure, treatment education
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Engaging lay counsellors to provide a combination package of evidence-based interventions in Nyanza, Kenya and addressing partner disclosure, as well as pre-treatment education about the benefits of antiretroviral therapy (ART) for maternal and child health in Malawi’s Option B+ programme, improved retention in care and reduced loss to follow-up of mothers with HIV and their infants, studies presented last week at the Conference on Retroviruses and Opportunistic Infections (CROI 2016) in Boston show.

Poor retention in care of mothers with HIV and their infants across the prevention of mother-to-child transmission (PMTCT)/paediatric care continuum continues to undermine what is otherwise a remarkable success. If retention is not adequately addressed, programme success and maternal and infant health are threatened.

In resource-poor settings, studies have shown 17% of pregnant women with HIV initiated on ART do not return after their first antenatal care visit; one third of women with HIV who give birth in a clinic are lost to follow-up three months after delivery.


retention in care

A patient’s regular and ongoing engagement with medical care at a health care facility. 


In HIV, refers to the act of telling another person that you have HIV. Many people find this term stigmatising as it suggests information which is normally kept secret. The terms ‘telling’ or ‘sharing’ are more neutral.

inter-quartile range

The spread of values, from the smallest to the largest. The inter-quartile range (IQR) only includes the middle 50% of values and measures the degree of spread of the most common values.

loss to follow up

In a research study, participants who drop out before the end of the study. In routine clinical care, patients who do not attend medical appointments and who cannot be contacted.

case-control study

An observational study in which a group of people with an infection or condition (called ‘cases’) are compared with a group of people without the infection or condition (called ‘controls’). The past events and behaviour of the two groups are compared. Case-control studies can help us understand the risk factors for having an infection or a condition. However, it is difficult both to accurately collect information about past events and to eliminate bias from case-control studies.

Reports have described the unique needs – including treatment literacy of postpartum women with HIV – to be addressed if they are to return to and/or be retained in care.

Simplification of PMTCT services and adoption of Option B+ (the availability of lifelong treatment regardless of CD4 count for pregnant and breastfeeding women with HIV) in many countries, notably Malawi, have had extraordinary success in significantly reducing the number of vertical (from mother to child) transmissions. However, loss to follow-up (LTFU) among women enrolled onto treatment as a result of Option B+ in Malawi is as high as 29% after a year.

Several studies presented at CROI 2016 looked at reasons for loss to follow-up among mothers enrolled on antiretroviral treatment, and interventions to improve retention.

When mothers 'lost to follow up' go elsewhere

Kate Clouse reported on a study undertaken in South Africa that raised concerns about inconsistences in accurately measuring rates of loss to follow-up, highlighting the need for standardised guidelines across countries.

In the absence of a nationally linked health database, estimates did not account for unreported transfers.

The researchers hypothesised that so-called 'clinic shoppers' (defined as seeking care at a new ART facility) and rural-urban travel after delivery artificially inflated estimates of loss to follow-up. Using a national laboratory database, they traced lost patients to assess continuity of care and update estimates of loss to follow-up. Of the third successfully traced, almost 50% continued care at a new facility. Of these, close to three quarters were 'clinic shoppers' often suspending care for extended periods of time resulting in immunosuppression.

Family circumstances, time constraints and distance to clinic are some of the reasons many women will be in and out of care for extended periods of time during pregnancy and after delivery.

Dr Clouse concluded a better understanding of how women choose facilities, access care and travel around at the time of delivery is needed.

Improving retention through active follow up

While a variety of interventions to improve retention exist, a rigorous assessment of their efficacy to improve maternal and infant outcomes is lacking.

Conducted at 10 PMTCT sites in Nyanza, Kenya between September 2013 and September 2015, the Maternal-Infant Retention for Health (MIR4HEALTH) study evaluated the effectiveness of lay counsellor administrated evidence-based interventions (active patient follow-up or APFU) compared to standard of care (SOC) on mother-infant retention.

At the start of antenatal care, pregnant women with HIV were randomised to APFU comprising: lay counsellor-administered individualised health education, home visits, phone and short message appointment reminders, immediate physical tracing after a missed clinic visit and individualised adherence and retention support compared to routine PMTCT/postnatal HIV care according to national guidelines.

Of the 340 women (170 were randomised to each arm) close to a third (106) knew they were HIV positive at enrolment (58 and 48 in the APFU and SOC arms, respectively). Median age was 26 years (IQR: 22-30) with median gestation age 24 weeks (IQR: 17-28) and median CD4 cell count 426 cells/mm3 (IQR: 274-601).

Overall, 11.5% of the pregnancies resulted in poor outcomes with no difference between the two arms.

Retention of mother-infant pairs was defined as clinic attendance six months after birth (plus or minus three months).

At six months after birth, 130 mother-infant pairs were retained in the APFU arm compared to 112 in the SOC arm.

Loss to follow-up was significantly lower in the APFU arm compared to the SOC arm, 18.8% and 28.2%, respectively, p = 0.04.

Older age, having disclosed to a partner and known HIV-positive status at enrolment were associated with lower attrition.

Nine infants had positive PCR, three in the APFU and six in the SOC arms, p = 0.25.

Dr Fayorsey concluded that employing a lay counsellor-led combination package of evidence-based interventions resulted in a moderate decrease in attrition among mother-infant pairs receiving PMTCT care in this high prevalence community in Nyanza, Kenya.

Disclosure and retention in care

Data on which factors are linked to retention in Option B+ are scant. Risa Hoffman presented a case-control study undertaken in Central Malawi of women with HIV who started ART under Option B+ to look at those characteristics associated with retention, with a focus on the role of disclosure, pre-ART education and knowledge about the importance of Option B+ for maternal and child health.

Criteria for enrolment included having been out of ART care for more than 60 days with controls, in care for longer than 12 months, enrolled on a three to one ratio.

Fifty cases and 153 controls were enrolled. Median age was 30 years (IQR: 25-35). Over 80% started ART during pregnancy at a median gestational age of 24 weeks (IQR: 16-28). Of the women starting ART during pregnancy, 91% (39 out of 43) defaulted within three months of giving birth. 

Importantly, HIV disclosure to the primary sexual partner was the norm among women retained in care, 100% compared to 78%, p < 0.01.

In addition, the odds of being retained in care among women knowing their partner’s HIV status were more than fivefold higher compared to women who did not, 85% and 53%, respectively, OR: 5.20, (95% CI: 2.24-12.07), p < 001.

Odds of retention were significantly higher among women over the age of 25, OR: 2.44 (95% CI: 1.24-4.81), p < 0.01. Completion of primary school provided a significant three-fold higher odds ratio of retention. While the odds ratio of retention among those with pre-ART education was more than sixfold higher, OR: 6.17 (95% CI: 3.06-12.43), p < 0.001.

Conversely, travel time to the clinic of more than three hours and later gestational age at the time of starting ART were associated with significantly reduced odds of retention, OR: 0.13 (95% CI: 0.05-0.37), p < 0.001 and OR: 0.95 (95% CI: 0.91-0.99), p < 0.01, respectively.

The more questions correctly answered on Option B+ knowledge, and one or more means of support while taking ART, increased the odds of retention by close to two- and more than threefold, respectively.

After adjusting for age, schooling and travel time to the clinic, multivariate analysis showed knowing the partner’s HIV status and Option B+ knowledge remained associated with retention, OR: 4.07 (95% CI: 1.51-10.94), p = 0.02 and OR: 1.60 (95% CI: 1.15-2.23), p = 0.004, respectively.

Dr Hoffman concluded interventions addressing partner disclosure and strengthening pre-ART education about the benefits of ART for maternal and child health should be evaluated as strategies to improve retention in Malawi’s Option B+ programme.

In a discussion Dr Sundeep Gupta stressed, in addition to increased decentralisation and integration, monitoring and evaluation and quality improvement systems on a large scale are needed to adequately address the multifactorial reasons for loss to follow-up.


Fayorsey R et al. Randomized trial of a lay counsellor-led combination intervention for PMTCT retention. Conference on Retroviruses and Opportunistic Infections, Boston, abstract 791, 2016.

View the abstract on the conference website.

View a webcast of this session on the conference website.

Clouse K et al.  Continuity of care among pregnant women lost to follow-up after initiating ART. Conference on Retroviruses and Opportunistic Infections, Boston, abstract 792, 2016.

View the abstract on the conference website.

View a webcast of this session on the conference website.

Hoffman RM et al. Disclosure and knowledge are associated with retention in Malawi’s Option B+ program. Conference on Retroviruses and Opportunistic Infections, Boston, abstract 793, 2016.

View the abstract on the conference website.

View a webcast of this session on the conference website.