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Community-based follow-up for late patients enrolled in a district-wide programme for antiretroviral therapy in Lusaka, Zambia
Global Health Sciences Literature Digest
Published June 19, 2008
Journal Article

Krebs DW, Chi BH, Mulenga Y, Morris M, Cantrell RA, Mulenga L, et al. Community-based follow-up for late patients enrolled in a district-wide programme for antiretroviral therapy in Lusaka, Zambia. AIDS Care 2008;20:311-17.


To evaluate a programme to follow up with patients who miss appointments at the antiretroviral therapy (ART) clinics.

Study Design

Clinic-based cohort.


Eighteen clinical ART service sites in Lusaka, Zambia.


Adults and adolescents (aged 16 years and older) enrolled in the Lusaka ART Programme who missed scheduled follow-up appointments.


The number and demographic and clinical characteristics of patients who were traceable, untraceable, or dead and the reasons for missed appointments.


As part of routine protocols for the Lusaka ART Programme,(1) home-based, non-professional, volunteer caregivers were trained to conduct home visits of patients who had missed appointments. The goal was to determine if the patient was still alive and, if so, to encourage continuation of clinical care and find the reasons for the missed appointment(s). Caregivers used contact information provided by the patients at the time of enrollment. Following the home visit, the caregivers wrote up a summary of their findings. To capture findings in a consistent manner, the authors developed codes that corresponded to a set of themes described in the written reports from the caregivers. The evaluation covered follow-up activities from May to September 2005. Demographic characteristics and HIV-related health indicators of those who were successfully traced, untraceable, or dead were compared using chi-square and Fischer exact or t test statistics. Logistic regression models were used to measure the unadjusted and adjusted relative risk (RR) for returning to the clinic.


During the evaluation period, home-based caregivers attempted to located 1343 patients. Of these, 654 (49%) had been placed on ART, 301 were in care but were not clinically eligible for ART, 388 (29%) did not return after their first visit (i.e., they did not receive their CD4 test result or their WHO clinical stage).

Of the 1343 patients, 554 (41%) could not be located because the address was incorrect, the patient had moved, or the patient was not home when the caregiver arrived. Information was obtained on 789 patients, of whom 359 (48%) had died. Of the 430 living patients traced, 133 (31%) returned to the clinic and the remaining 69% did not. On average, there were 18 home visits for every patient who returned to the clinic.

Reasons for missed appointments were available for 63% of the 430 traced and living patients. The most frequently cited reasons were being too sick to come to the clinic (23%), returning to the clinic required travel away from home (16%), being too busy (13%), uncertainty about continuing ART (7%), being discouraged from returning by others (7%), and having a surplus of medications (6%).


It is feasible to use trained, non-professional caregivers to trace patients who have missed appointments, but it is an inefficient way to increase clinic attendance. The reasons for failing to return to care are often an indication of worsening health. Methods to increase compliance with clinic visits that are efficient and cost effective are needed.

Quality Rating

The study is a secondary analysis of one component of a treatment program and as such, does not easily conform to the Newcastle-Ottawa rating scale for observational studies. The Lusaka ART Programme is not a study per se and may not be representative of HIV-infected persons in that region. This study was restricted to the patients who failed to return for follow-up appointments. It did not include data comparing patients who missed appointments with those who did not. This group was classified into patients who were located, not located, or dead. If one considers "missed appointment" as the exposure, then the two groups came from the same population. The outcome was clearly not present at the beginning and was assessed using clinical records. Follow-up was adequate.

In Context

Maintaining timely and ongoing medical care is important to enhancing adherence to ART and other treatments and to reducing morbidity and mortality. Several studies have demonstrated that timeliness for health related appointments is correlated with better outcomes among persons receiving ART.(2,3,4,5) Many of the patients who failed to return to the clinic had died. Efforts to follow-up patients provide a method of enhancing collection of vital statistics and allowing ART programmes to measure mortality in their clinic population.

Programmatic Implications

Continuity of care is essential to ensure the health benefits of ART. Efforts to enhance patient clinic attendance should include efficient methods of contacting patients for missed appointments as well as methods that can enhance continuity of care without the need to trace patients. Difficulty traveling to the clinics because of distance or failing health might be addressed by providing home-based care or mobile clinics.


  1. Stringer JS, Zulu I, Levy J, et al. Rapid scale-up of antiretroviral therapy at primary care sites in Zambia: feasibility and early outcomes. JAMA 2006 Aug 16;296(7):782-93.
  2. Berg MB, Safren SA, Mimiaga MJ, Grasso C, Boswell S, Mayer KH. Nonadherence to medical appointments is associated with increased plasma HIV RNA and decreased CD4 cell counts in a community-based HIV primary care clinic. AIDS Care 2005 Oct;17(7):902-7.
  3. Lucas GM, Chaisson RE, Moore RD. Highly active antiretroviral therapy in a large urban clinic: risk factors for virologic failure and adverse drug reactions. Ann Intern Med 1999 Jul 20;131(2):81-7.
  4. Nachega JB, Hislop M, Dowdy DW, et al. Adherence to highly active antiretroviral therapy assessed by pharmacy claims predicts survival in HIV-infected South African adults. J Acquir Immune Defic Syndr 2006 Sep;43(1):78-84.
  5. Rastegar DA, Fingerhood MI, Jasinski DR. Highly active antiretroviral therapy outcomes in a primary care clinic. AIDS Care 2003Apr;15(2):231-37.