Using concept mapping to explore why patients become lost to follow up from an antiretroviral therapy program in the Zomba District of Malawi

BackgroundRetention 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.MethodsCM 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.ResultsIn 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.ConclusionsMultiple 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.

[1]  N. Michael,et al.  Joint United Nations Programme on HIV/AIDS. , 2004, Military medicine.

[2]  H. Tweya,et al.  Outcomes and associated risk factors of patients traced after being lost to follow-up from antiretroviral treatment in Lilongwe, Malawi , 2011, BMC infectious diseases.

[3]  S. Gregson,et al.  "We, the AIDS people. . .": how antiretroviral therapy enables Zimbabweans living with HIV/AIDS to cope with stigma. , 2011, American journal of public health.

[4]  C. Feldman,et al.  Characteristics and Outcomes of Adult Patients Lost to Follow-Up at an Antiretroviral Treatment Clinic in Johannesburg, South Africa , 2008, Journal of acquired immune deficiency syndromes.

[5]  J. Stringer,et al.  Lost but Not Forgotten—The Economics of Improving Patient Retention in AIDS Treatment Programs , 2009, PLoS medicine.

[6]  S. Rosen,et al.  Why are antiretroviral treatment patients lost to follow-up? A qualitative study from South Africa , 2010, Tropical medicine & international health : TM & IH.

[7]  A. Zolopa,et al.  High levels of adherence do not prevent accumulation of HIV drug resistance mutations , 2003, AIDS.

[8]  C. Bowie,et al.  Epidemiology of HIV/AIDS in adults in Malawi. , 2007, Malawi medical journal : the journal of Medical Association of Malawi.

[9]  A. Fretheim,et al.  Barriers and facilitators to patients' adherence to antiretroviral treatment in Zambia: a qualitative study , 2008, SAHARA J : journal of Social Aspects of HIV/AIDS Research Alliance.

[10]  M. Maskew,et al.  Lost to follow up: contributing factors and challenges in South African patients on antiretroviral therapy. , 2007, South African medical journal = Suid-Afrikaanse tydskrif vir geneeskunde.

[11]  Kara Wools-Kaloustian,et al.  Cohort Profile: the international epidemiological databases to evaluate AIDS (IeDEA) in sub-Saharan Africa. , 2012, International journal of epidemiology.

[12]  Nneka Emenyonu,et al.  Transportation Costs Impede Sustained Adherence and Access to HAART in a Clinic Population in Southwestern Uganda: A Qualitative Study , 2009, AIDS and Behavior.

[13]  P. Arora,et al.  Outcome assessment of decentralization of antiretroviral therapy provision in a rural district of Malawi using an integrated primary care model , 2010, Tropical medicine & international health : TM & IH.

[14]  S. Kaaya,et al.  Explaining Adherence Success in Sub-Saharan Africa: An Ethnographic Study , 2009, PLoS medicine.

[15]  A. Gasasira,et al.  Using immunization delivery strategies to accelerate progress in Africa towards achieving the Millennium Development Goals. , 2008, Vaccine.

[16]  D. Cole,et al.  Livelihood Security and Adherence to Antiretroviral Therapy in Low and Middle Income Settings: A Systematic Review , 2011, PloS one.

[17]  A. De Luca,et al.  Incidence and predictors of death, retention, and switch to second-line regimens in antiretroviral- treated patients in sub-Saharan African Sites with comprehensive monitoring availability. , 2009, Clinical infectious diseases : an official publication of the Infectious Diseases Society of America.

[18]  A. Anema,et al.  Food insecurity and HIV/AIDS: Current knowledge, gaps, and research priorities , 2009, Current HIV/AIDS reports.

[19]  K. Herbst,et al.  An evaluation of the District Health Information System in rural South Africa. , 2008, South African medical journal = Suid-Afrikaanse tydskrif vir geneeskunde.

[20]  B. Chi,et al.  Community-based follow-up for late patients enrolled in a district-wide programme for antiretroviral therapy in Lusaka, Zambia , 2008, AIDS care.

[21]  Mary Kane,et al.  Concept Mapping for Planning and Evaluation , 2006 .

[22]  M. Chopra,et al.  Factors related to HIV disclosure in 2 South African communities. , 2007, American journal of public health.

[23]  Jeffrey N. Martin,et al.  Sampling-based approach to determining outcomes of patients lost to follow-up in antiretroviral therapy scale-up programs in Africa. , 2008, JAMA.

[24]  E. Szumilin,et al.  Vital status of pre‐ART and ART patients defaulting from care in rural Malawi , 2010, Tropical medicine & international health : TM & IH.

[25]  William M. K. Trochim,et al.  Concept Mapping as an Alternative Approach for the Analysis of Open-Ended Survey Responses , 2002 .

[26]  K. Mate,et al.  Challenges for Routine Health System Data Management in a Large Public Programme to Prevent Mother-to-Child HIV Transmission in South Africa , 2009, PloS one.

[27]  Seth C. Kalichman,et al.  Adherence to combination antiretroviral therapies in HIV patients of low health literacy , 1999, Journal of General Internal Medicine.

[28]  I. Buchan,et al.  Adherence to HAART : A Systematic Review of Developed and Developing Nation Patient-Reported Barriers and Facilitators , 2006 .

[29]  Anthony D Harries,et al.  Assessing the quality of data aggregated by antiretroviral treatment clinics in Malawi. , 2008, Bulletin of the World Health Organization.

[30]  E. Schouten,et al.  True outcomes for patients on antiretroviral therapy who are "lost to follow-up" in Malawi. , 2007, Bulletin of the World Health Organization.

[31]  Health information system reform in South Africa : developing an essential data set , .

[32]  D. Gareta,et al.  Early active follow‐up of patients on antiretroviral therapy (ART) who are lost to follow‐up: the ‘Back‐to‐Care’ project in Lilongwe, Malawi , 2010, Tropical medicine & international health : TM & IH.

[33]  G. Smith.  1946 and all that: updating cohort profiles as the participants and investigators age , 2011 .

[34]  Matthias Egger,et al.  Electronic medical record systems, data quality and loss to follow-up: survey of antiretroviral therapy programmes in resource-limited settings. , 2008, Bulletin of the World Health Organization.

[35]  Sydney Rosen,et al.  Patient Retention in Antiretroviral Therapy Programs in Sub-Saharan Africa: A Systematic Review , 2007, PLoS medicine.

[36]  G. Murphy,et al.  Concept mapping for planning and evaluation , 2007, Journal of Management & Organization.

[37]  L. Swartz,et al.  Structural barriers to ART adherence in Southern Africa: Challenges and potential ways forward , 2011, Global public health.

[38]  M. Carrasco.  Characteristics and outcomes of adult patients lost to follow-up at an antiretroviral treatment clinic in johannesburg, South Africa , 2008 .

[39]  K. Deribe,et al.  Defaulters from antiretroviral treatment in Jimma University Specialized Hospital, Southwest Ethiopia , 2008, Tropical medicine & international health : TM & IH.

[40]  A. Hardon,et al.  Hunger, waiting time and transport costs: Time to confront challenges to ART adherence in Africa , 2007, AIDS care.

[41]  D. Ross-Degnan,et al.  Monitoring Adherence and Defaulting for Antiretroviral Therapy in 5 East African Countries: An Urgent Need for Standards , 2008, Journal of the International Association of Physicians in AIDS Care.

[42]  A. Gielen,et al.  An Introduction to Concept Mapping as a Participatory Public Health Research Method , 2005, Qualitative health research.

[43]  George Lewert.  Children and AIDS , 1988, Social casework.

[44]  A. Martin-Hilber,et al.  Patient‐reported barriers and drivers of adherence to antiretrovirals in sub‐Saharan Africa: a meta‐ethnography , 2010, Tropical medicine & international health : TM & IH.

[45]  A. Harries,et al.  How can the community contribute in the fight against HIV/AIDS and tuberculosis? An example from a rural district in Malawi. , 2006, Transactions of the Royal Society of Tropical Medicine and Hygiene.

[46]  G. Birbeck,et al.  Antiretroviral adherence in rural Zambia: the first year of treatment availability. , 2009, The American journal of tropical medicine and hygiene.

[47]  D. Wantland,et al.  Social support and medication adherence in HIV disease in KwaZulu-Natal, South Africa. , 2008, International journal of nursing studies.

[48]  D. Thea,et al.  Barriers to acceptance and adherence of antiretroviral therapy in urban Zambian women: a qualitative study , 2009, AIDS care.

[49]  Nneka Emenyonu,et al.  Understanding Reasons for and Outcomes of Patients Lost to Follow-Up in Antiretroviral Therapy Programs in Africa Through a Sampling-Based Approach , 2010, Journal of acquired immune deficiency syndromes.

[50]  L. Myer,et al.  Early loss of HIV-infected patients on potent antiretroviral therapy programmes in lower-income countries. , 2008, Bulletin of the World Health Organization.

[51]  D. Bangsberg,et al.  Food Insecurity as a Barrier to Sustained Antiretroviral Therapy Adherence in Uganda , 2010, PloS one.