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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.

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Risk factors and true outcomes of children lost to follow-up from antiretroviral therapy in Lilongwe, Malawi

C. ArduraGracia, H. Tweya, C Feldacker, S. Phiri, R. Weigel

lost to follow up in art programmes
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
  • 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
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
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
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
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
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
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

201 in B2C

158 (78,6%)

43 (21,4%)



Not traced

/ Not found

17 (10,8%)

41 (25,9%)

100 (63,3%)



Alive not TO


Never started ART

38 (93%)



3 (7%)

Stop ART



On ART with Gaps


On ART Uninterrupted

Results: B2C tracing

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

results art outcomes
Results: ART outcomes

Alive on ART



Stopped ART

Transfer Out

80% of children expected after tracing returned

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

  • 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%
  • 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