Option B + PMTCT strategy in Malawi

1. Loss to follow-up among women in Option B+ PMTCT programme in Lilongwe, Malawi: Understanding outcomes and reasons Hannock Tweya, Salem Gugsa, Mina Hosseinipour, Colin Speight, Wingston Ng’ambi, Mphatso Bokosi, Janet Chikonda, Annie Chauma, Veena Sampathkumar, Tiwonge Mtande, Sam Phiri

2. Option B+ PMTCTstrategy in Malawi • Use of antiretroviral therapy in HIV-infected women significantly reduces vertical transmission; from 25% to 2% • In 2011, Malawi embarked on a novel PMTCT programme known as “Option B+” • Lifelong ART for pregnant and breastfeeding women regardless of WHO clinical stage or CD4 count • NVP syrup for 6 weeks for infants • Option B+ resulted in a 7-fold increase in the number of women starting ART for PMTCT between the 2nd quarter of 2011 and 3rd quarter 2012

3. Loss to follow-up in Option B+ PMTCT • Loss to follow-up (LTFU) from care is a considerable barrier to the effectiveness of PMTCT • 27% are LTFU at 12 month nationally (Malawi HIV Report Dec 2013) • 24% are LTFU in the first 6 months in facilities with high patient volume (Tenthani et al AIDS 2013) • Information on LTFU in women starting lifelong ART for PMTCT remains limited

4. Objectives • To determine factors associated with LTFU among women starting lifelong ART for PMTCT • To determine true outcomes of women who are lost to follow-up from PMTCT care • To describe reasons for LTFU from Option B+ PMTCT programme

5. Methods: Study design & Setting • We conducted a retrospective cohort study using data from • A real-time, touch screen-based, electronic Medical Records (EMR) • A patient tracing programme • Bwaila Hospital, Lilongwe • Has the busiest ANC and Maternity wings with over 14,000 ANC registrations annually • Provision of PMTCT services is a collaborative effort, led by the Lilongwe District Health Office and other partners • Starts ~110 women on ART monthly based on Option B+ criteria

6. Methods: PMTCT services • All pregnant women with unknown HIV status undergo • A group HIV counselling session • ‘Opt-out’ provider-initiated HIV testing • “Expert mothers” provide psychosocial and adherence support to HIV-infected women on initial and follow-up visits • All HIV-infected women are registered in the EMR System and started on a lifelong ART on the day of HIV diagnosis • At each visit, number of remaining ARV pills and new supply are recorded and next appointment is electronically calculated

7. Methods: Tracing programme • The patient tracing programme intends to decrease treatment interruption and prevent LTFU • Tracing staff generate a list of women that miss an appointment by at least three weeks • The staff confirms the list by checking in patients files • Women who consent are traced up to three times by phone call or home visit • The staff complete standard paper forms on tracing efforts, outcomes and reasons for missing appointment

8. Methods: Analysis • Tracing outcomes include: • Dead, uninterrupted therapy, treatment interruptions, self transfer out, stopped ART, never started ART and not traced • For the purpose of the tracing programme, LTFU was defined as missing a scheduled clinic appointment for at least 3 weeks. • Multivariable Poisson regression was used investigate factors associated with LTFU

9. Results: Patients details & LTFU • Between September 2011 and September 2013, 2930 HIV-infected women started ART for PMTCT Option B+: • 2,458 (84%) were pregnant • Median age at ART initiation was 26 years (IQR 22-30) • Median follow-up of 8.2 months (IQR 3.1-16.7) • Of 2,930 women, 577 (20%) missed a scheduled clinic appointment for at least 3 weeks • 272 only collected ARV’s at the time of initiation and did not return • Overall incidence of LTFU was 23.5 % per year • In terms of retention: 85% at 3 months, 82% at 6 months 79% at 12 months

10. Results: Factors associated with LTFU

11. 577 LTFU women 228 (40%) 349 (60%) Successfully Traced Not traced / Not found Results: Tracing Outcomes *No significant differences between those traced or not

12. 577 LTFU women 228 (40%) 349 (60%) Successfully Traced Not traced / Not found 67 (30%) 152 (66%) Self Transfer Alive not TO Results: Tracing Outcomes 9 (4%) Died

13. 577 LTFU women 228 (40%) 349 (60%) Successfully Traced Not traced / Not found 9 (4%) 67 (30%) 152 (66%) Self Transfer Died Alive not TO 9 (6%) ART interruption 7 (5%) Not started ART 5 (3%) Refused interview Results: Tracing Outcomes 118 (77%) Stopped ART 13 (9%) On ART Uninterrupted

14. Results: Reasons for ART discontinuations (N=111)

15. Discussion • Overall LTFU was 23.5% per year • Higher than that reported in the general HIV-infected individuals accessing ART for personal health ( 9.3% per year) • 47% of women who were lost to follow-up received ARVs once and never returned for their appointment • May suggest that a proportion of these women never started ART • Being older ( 25+ years) associated with reduced risk of LTFU • May have settled lifestyles which allow them to better manage ARVs • Likelihood of LTFU decreased with increasing year of programme implementation between 2011 and 2013 • Likely due to the stabilization of the programme

16. Discussion • A sizeable proportion of women could not be traced due to incorrect addresses documented in the patient clinic files. • False physical addresses because of fear of stigma and discrimination • Among LTFU women that were traced: • Half had stopped ART, leaving their infants at high risk of HIV • A third self-transferred to another clinic, suggesting underestimation of national retention in PMTCT programme

17. Recommendations • ANC/ART clinics should further enhance post-test counseling by engaging HIV testing counselors and expert mothers for ongoing counseling and psychosocial support. • Establishing targeted programmes for young women • ART clinics need to establish data linkages through which information of patients that transfer can be shared. • Further decentralization of PMTCT services with good ANC/Maternity services

18. Acknowledgments Mother2Mother Baobab Health Trust