Phone and home visit follow-up and appointment trackers improve retention in HIV care for pregnant women and new mothers

Phone and home visit follow-ups, improved use of appointment books to track attendance and patient-held appointment calendars resulted in significant increases in retention in care among HIV-positive pregnant and postnatal women and HIV-exposed infants in rural Uganda, Jessica Joseph speaking on behalf of the Clinton Access Health Initiative and the Ugandan Ministry of Health told participants at the 21st International AIDS Conference (AIDS 2016) in Durban last week.

The findings led to the adoption of this model as the national standard of care for follow-up of mother-infant pairs in all prevention of mother-to-child transmission (PMTCT) sites.

This six-month pilot study, conducted in 2014 comprising over 800 women and more than 300 infants from 20 rural health facilities covering six districts in four regions, resulted in a 7.5% (72.8% to 80.3%, p = 0.009) increase in five-month retention in care among mothers.

Women who started antiretroviral therapy (ART) in pregnancy drove the increase.

Older age and having had a CD4 test increased the likelihood of being retained in care for HIV-positive mothers.

Retention among HIV-exposed infants increased by a significant 19.8% (41.3% to 61.1%, p = 0.001) in the five-month period.

Simplification of PMTCT services and the adoption of Option B+ (the availability of lifelong treatment regardless of CD4 count for HIV-positive pregnant and breastfeeding women) in Uganda in March 2013 has had remarkable success in preventing vertical (from mother-to-child) transmission. Within a year of the rollout of Option B+ new paediatric infections had almost halved.

However, poor retention along the PMTCT cascade needs to be addressed to achieve Uganda’s goal of elimination of new infections. Keeping mothers on antiretrovirals, especially in the postpartum period when most infections happen, is a serious challenge. Only 40% of mother-infant pairs were still in care at the end of the breastfeeding period resulting in the transmission rate quadrupling, from 2% at six weeks to 8%. If retention is not adequately addressed programme success and maternal and infant health are threatened. This is true in Uganda as it is in other resource-poor settings where studies have shown 17% of HIV-positive pregnant women initiated on ART do not return after their first antenatal care visit; one-third of HIV-positive women who give birth in a clinic are lost to follow-up three months after delivery.

The follow-up programme comprised four components developed with the health facilities:

• Patient appointment books: tracked attendance for Option B+ mothers and infants in care, and type of follow-up required (if necessary).
• Patient appointment cards: distributed to mothers and exposed infants, documenting current visit and indicating next visit date.
• Phone follow-ups: utilised for mothers and infants two days after a missed appointment.
• Home visits: conducted three days after scheduled visit date if patient did not return after phone call.

The study was designed to evaluate the effectiveness of these follow-up activities and improved patient management in increasing retention for both HIV-positive pregnant and postnatal women and for HIV-exposed infants. The study compared the pre-intervention period (June to December 2013) and the intervention period from March to August 2014. Retrospective data were collected from facility registers and appointment books.

Retention in care, in line with the ART visit schedule, was defined as a woman or infant in care for a minimum of five months after enrolment into the cohort.

The study enrolled 988 women and 358 infants, of which 814 women and 332 infants were available for evaluation at the end of the follow-up period (endline).

Among infants median age at first visit was 8.4 weeks and 7.1 weeks at baseline and endline, respectively. Just over half were enrolled by six weeks of age at baseline and 64% at endline.

Among women starting ART during pregnancy retention increased significantly from 68.3% to 74.8%, an increase of 7.5% (p = 0.006). Infant retention in care also increased significantly from 41.3% to 61.1% (p = 0.001).

Nevirapine and cotrimoxazole initiation also increased significantly among infants retained in care; from 23% to 79.1%, p < 0.001 and from 33.4% to 70.9%, p = 0.008, respectively.

Of the 30% of missed appointments requiring follow-up, 2% were not followed up. The return rate with follow-up was 70% compared to only 12% among those not followed up.

The implementation of this model as part of the national Option B+ retention monitoring scale-up will result in fewer HIV-positive infants and better health outcomes for HIV-positive mothers.