Risk factors and true outcomes of children lost to follow-up from

antiretroviral therapy in Lilongwe, Malawi

C. Ardura Gracia, H. Tweya, C Feldacker, S. Phiri, R. Weigel

Lost to follow-up in ART programmes

• Lost to follow-up (LTFU) is common in ART programmes in sub-Saharan Africa– 21% in the first 6 months– 26-30% in the first 2 years

• LTFU can lead to treatment interruptions– Development of viral resistance to ART– Hamper HIV prevention efforts

• Limited information regarding LTFU in children

Objectives

• To explore factors associated with LTFU in children accessing ART

• To describe children’s true ART outcomes as determined through Back-To-Care project

Methods: Study Setting• Lighthouse and Martin Preuss centre (MPC) clinics:

large, public HIV/AIDS clinics in Lilongwe, Malawi• Lighthouse and MPC use electronic data systems

(EDS)• All HIV-infected patients are registered in the EDS• Visits are initially scheduled monthly then extended

to 2 months for ART patients• At each visit, number of remaining ARV pills and

new supply are recorded and next appointment is electronically calculated

Methods: Back-To-Care• Active tracing of LTFU patients was established in

July 2006 – called Back-To-Care (B2C) project• The B2C program intends to decrease treatment

interruption and prevent loss to follow-up• Every month, B2C staff generate a list of patients

that miss an appointment by at least 3 weeks• B2C team confirms the list by checking in

patients files• Patients who consent are traced up to 3 times by

phone or home visit

Methods: B2C Data Collection

• B2C tracing staff complete paper forms on tracing efforts

• Information on tracing outcomes and future patient intention of ART are entered in B2C MS Access database

• B2C data linked to the EDS using unique identifiers– To identify patients who return after tracing

Methods: Analysis• ART outcomes for national programme include

transfer out, LTFU, ART stop, death and alive on ART

• B2C outcomes include death, uninterrupted therapy, on ARV with gaps, official transfer out, self transfer out, ART stop, never started ART and not traced

• Patients were censored on – Last clinic visit date– Outcome date ( death)

• Cox proportional hazard model was used to identify independent risk factors for LTFU among baseline patient characteristics

Results: Patients details• Between Apr 2006 and Dec 2010, 1182 children

accessed ART at Lighthouse and MPC clinics– 197 were then excluded from analysis due to

incomplete or inaccurate data• Of the 985 included in the analysis,

– 1,999 children-years of follow-up– 48% were male– Median age at ART initiation 81 months (IQR:

39-128)

Results: LTFU• 251 (25%) had at least one missed appointment

– Median follow-up time was 9 months (IQR: 2 -24 months)

• LTFU rate was 12.6/100 children-years– 11.8% at 6 months; 16.8% at 12 months

• Risk factors for LTFU in multivariable analysis– Wasting (AHR 1.6 95% CI 1.17-2.18)– < 2 years at ART start (AHR 1.55 95% CI 1.02 – 2.37)

• No statistically significant association with – Gender, distance to clinic, advanced WHO stage

Results: B2C tracing

*No significant differences between those included in B2C list or not, or between those traced or not

201 in B2C

158 (78,6%) Successfully Traced

43 (21,4%) Not traced / Not found

17 (10,8%) Died

41 (25,9%) TO

100 (63,3%) Alive not TO

38 (93%) Official

3 (7%) ‘Silent’

2 Never started ART

39 Stop ART

31 On ART Uninterrupted

28 On ART with Gaps

ART outcomes before/after correcting for true outcomes of LTFU children actively traced by the B2C team

Results: ART outcomes

0% 20% 40% 60%

Pre-B2CPost-B2C

80% of children expected after tracing returned

Alive on ART

LTFU

Died

Stopped ART

Transfer Out

Conclusions • Majority of LTFU children were alive but had

missed appointments– May be due to less capable or motivated

guardians• Wasting and young age (<2 years) were

associated with higher rate of LTFU• Lower mortality rate (11%) among children traced

compared to other studies• Higher proportion of official transfer-outs

compared to other studies but similar to adults – poor documentation

• After tracing, LTFU rate reduced by 62% and mortality estimates increased from 2.6% to 4.8%

Recommendations• Active LTFU of children on ART should be

encouraged– Reduces LFTU rates– Increases retention– Improves mortality estimates

• Transfer out patients should be better documented to prevent unnecessary tracing

Acknowledgments