title: Using concept mapping to explore why patients become lost to follow up from an antiretroviral therapy program in the Zomba District of Malawi.
abstract: BACKGROUND
  Retention in antiretroviral therapy (ART) programmes remains a challenge in many settings including Malawi, in part due to high numbers of losses to follow-up. Concept Mapping (CM), a mix-method participatory approach, was used to explore why patients on ART are lost to follow-up (LTFU) by identifying: 1) factors that influence patient losses to follow-up and 2) barriers to effective and efficient tracing in Zomba, Malawi.
  
  
  METHODS
  CM sessions (brainstorming, sorting and rating, interpretation) were conducted in urban and rural settings in Zomba, Malawi. Participants included ART patients, ART providers, Health Surveillance Assistants, and health managers from the Zomba District Health Office. In brainstorming, participants generated statements in response to "A specific reason why an individual on ART becomes lost to follow-up is…" Participants then sorted and rated the consolidated list of brainstormed items. Analysis included inductive qualitative methods for grouping of data and quantitative cluster identification to produce visual maps which were then interpreted by participants.
  
  
  RESULTS
  In total, 90 individuals brainstormed 371 statements, 64 consolidated statements were sorted (participant n = 46), and rated on importance and feasibility (participant n = 69). A nine-cluster concept map was generated and included both patient- and healthcare-related clusters such as: Stigma and Fears, Beliefs, Acceptance and Knowledge of ART, Access to ART, Poor Documentation, Social and Financial Support Issues, Health Worker Attitudes, Resources Needed for Effective Tracing, and Health Worker Issues Related to Tracing. Strategies to respond to the clusters were generated in Interpretation.
  
  
  CONCLUSIONS
  Multiple patient- and healthcare focused factors influence why patients become LTFU. Findings have implications particularly for programs with limited resources struggling with the retention of ART patients.
authors.affiliation: Dalla Lana School of Public Health, University of Toronto, Toronto, Canada. m.vanlettow@dignitasinternational.org.
authors.forename: Beth
authors.initials: B
authors.lastname: Rachlis
authors.forename: Farah
authors.initials: F
authors.lastname: Ahmad
authors.forename: Monique
authors.initials: M
authors.lastname: van Lettow
authors.forename: Adamson S
authors.initials: AS
authors.lastname: Muula
authors.forename: Medson
authors.initials: M
authors.lastname: Semba
authors.forename: Donald C
authors.initials: DC
authors.lastname: Cole
mesh_terms: D000328:Adult; D044966:Anti-Retroviral Agents / Q000627:therapeutic use*; D005260:Female; D015658:HIV Infections / Q000188:drug therapy*; D007722:Health Knowledge, Attitudes, Practice; D006282:Health Personnel / Q000592:standards; D006297:Health Services Accessibility; D054625:Healthcare Disparities / Q000191:economics / Q000592:standards; D006801:Humans; D059012:Lost to Follow-Up; D008295:Malawi; D008297:Male; D010342:Patient Acceptance of Health Care; D015397:Program Evaluation; D036301:Qualitative Research; D011785:Quality Assurance, Health Care / Q000379:methods / Q000592:standards*
chemical_list: D044966:Anti-Retroviral Agents