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

Option B+ PMTCT strategy 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

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

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

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

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

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

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

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

Results: Factors associated with LTFU

Characteristics Adjusted Rate

Ratios (95% CI) P-Value

Age at ART initiation (years) <0.001

13 - 24 1.29 (1.09 – .52)

25+ 1.00

Reason for ART initiation <0.001

Breastfeeding 0.63 (0.49-0.89)

Pregnant 1.00

Employment Status 0.177

Yes 0.87 (0.71-1.07)

No 1.00

Year of B+ Implementation <0.001

2011 1.25 (1.06-1.49)

2012 1.00

2013 0.41 (0.29-0.58

Results: Tracing Outcomes 577 LTFU women

228 (40%) Successfully Traced

349 (60%) Not traced / Not found

*No significant differences between those traced or not

Results: Tracing Outcomes 577 LTFU women

228 (40%) Successfully Traced

349 (60%) Not traced / Not found

67 (30%) Self Transfer

152 (66%) Alive not TO

9 (4%)Died

Results: Tracing Outcomes 577 LTFU women

228 (40%) Successfully Traced

349 (60%) Not traced / Not found

9 (4%) Died

67 (30%) Self Transfer

152 (66%) Alive not TO

9 (6%) ART interruption

7 (5%) Not started ART

5 (3%) Refused interview

Stopped ART118 (77%)

On ART Uninterrupted13 (9%)

Results: Reasons for ART discontinuations (N=111)

Reasons for ART discontinuation n

%

Travelled away 42 38%

Transport costs 17 16%

Limited information about ARVs 11 10%

Suspected side effects of ARVs 11 10%

Very weak/sick 11 10%

Non-disclosure of HIV status to the spouse 9 8%

Religious belief 5 5%

Forgotten to take ARVs 5 5%

Other reasons 49 44%

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

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

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

AcknowledgmentsMother2Mother

Baobab Health Trust