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Loss to Follow-Up of Stable Antiretroviral Therapy Patients in a Decentralized Down-Referral Model of Care in Johannesburg, South Africa

O'Connor, Cara MPH; Osih, Regina MD, MPH; Jaffer, Ambereen MPH

JAIDS Journal of Acquired Immune Deficiency Syndromes: 1 December 2011 - Volume 58 - Issue 4 - p 429–432
doi: 10.1097/QAI.0b013e318230d507
Brief Report: Epidemiology and Prevention

Abstract: A retrospective record review was conducted for patients down referred to primary health care facilities between 2007 and 2009 to assess the rate and reported reasons for loss to follow-up among stable antiretroviral patients in a down-referral model of care in Johannesburg, South Africa. Missing patients were traced telephonically. Of 3361 patients down referred, 4.11% were lost to follow-up. Most patients who were lost to follow-up were lost at the transfer stage between initiation and maintenance sites. Decentralization and nurse management of ART should be prioritized to increase access to and retention in HIV/AIDS care.

Wits Reproductive Health and HIV Institute (WRHI).

The clinical activities in inner-city Johannesburg are supported by the South African National and Gauteng Provincial Departments of Health and Social Development with additional funding and support from PEPFAR in a grant from USAID to the Reproductive Health and HIV Research Unit of the University of the Witwaterstrand.

The authors have no funding or conflicts of interest to disclose.

Correspondence to: Cara O'Connor, MPH, Wits Institute for Sexual, Reproductive Health, HIV and Related Diseases, 1605 E. 2nd Street #302 Long Beach, CA 90802 (e-mail:

Received March 8, 2011

Accepted August 1, 2011

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The scale-up of antiretroviral therapy (ART) represents a major shift in the way health services are delivered in sub-Saharan Africa. Ongoing chronic care, as opposed to curative care, requires long-term commitment from patients and providers.1 For patients, indirect costs of ART can include missed days of employment, transport costs, and other out-of-pocket expenses. These costs are routinely cited as reasons patients default from treatment.2–5

Treatment interruptions and loss to follow-up are associated with poor clinical outcomes, mortality, and development of drug resistance.1,3 In assessing the success of ART program, a valid measure should look not only at mortality but also at loss to follow-up.6

In a 2007 systematic review of patient retention in ART programs in sub-Saharan Africa, Rosen et al7 found that only about 62% of those who started on ART remained in care at 24 months after initiation. A follow-up study by Fox et al6 in 2010 found that 76% of patients remained in care after 24 months and 64.6% after 36 months. Lower baseline CD4 count, younger age, and male gender have been associated with increased loss to follow-up in ART programs.6,8,9

A large majority of mortality and of loss to follow-up occurs in patients' first year on ART.6,9,10 With each additional year on ART, failure to retain patients is increasingly attributable to loss to follow-up and not to recorded mortality.10

In South Africa, the rapid scale-up of ART services since 2005 has been associated with increasing rates of loss to follow-up, presenting a major threat to the effectiveness of the national program.10 The trend in South Africa reflects a larger global trend, where national ART programs with larger numbers of patients have corresponding higher rates of loss to follow-up.8

Across Southern Africa, decentralization of ART services has proven to be an effective strategy for increasing access to care and improving patient retention.11–18 Decentralization has been defined as “the process of moving delivery of ART from hospitals to clinics, thereby improving access (proximity) to care, and encouraging greater retention in care (less defaulting).”14 Decentralized care models have had lower rates of loss to follow-up than hospital-based programs,13,16 and these models have significantly decreased the burden on human resources at tertiary hospital facilities.13,14,16

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Study Sites and Population

Inner-city Johannesburg Region F has a population of 433,954 based on the 2001 national census, with unofficial figures reaching 900,000 to 1 million people.19,20 According to UNAIDS reports, among adults aged 15–49 in South Africa HIV prevalence was 18.1% in 2007.21 At the time of this study, 3 sites in the region were accredited by the provincial department of health to initiate patients on ART—1 tertiary teaching hospital close to the city center, 1 secondary care hospital in a southern suburb of the city, and 1 community health centre in the city center. Because the roll-out of the ART program in South Africa in 2004–2005 until September 2009, these 3 sites initiated over 18,000 patients on ART. These sites serve highly mobile populations and a high number migrants and transitional residents.20,22 The mobile nature of the population poses a challenge for retaining patients in care.

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Down-Referral Model for Decentralized HIV Care and Treatment

By 2007, there were growing concerns in the public health care sector that the existing model for care, which centered at a few initiation sites was problematic, as these sites were rapidly becoming saturated with patients. In September 2007, the Reproductive Health and HIV Research Unit, City of Johannesburg, and the Gauteng Department of Heath rolled out a pilot down-referral program whereby stable patients were referred to receive ART at designated primary health care (PHC) facilities. The process of “down referral” was intended to decentralize care, making access more convenient by providing patients with treatment closer to their homes or work, in clinics with shorter queues. The model aimed to decongest initiation sites and reduce loss to follow-up.

In this down-referral model, patients initiated ART at 1 of the 3 initiation sites and were followed up until they were considered stable on treatment—measured by time on treatment (at least 6 months), clinical progression, improved CD4 count, undetectable viral load, absence of opportunistic infections, and good adherence to treatment. After meeting these criteria, patients were eligible for down referral to 1 of 4 PHC facilities, where care and treatment were administered by a professional nurse trained in HIV management.

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Study Design

A retrospective cohort analysis was performed using routine data from patient records. Between May and September 2009, an audit was conducted on all down-referral patient records dating back to the implementation of the program in September 2007. The team cross-checked records from the 4 PHC sites against lists of down-referred patients from the initiation sites. Patient records were matched based on name, date of birth, and transfer date.

The audit identified patients who had missed their last routine ART appointment by more than 6 weeks. Patient follow-up workers made 3 attempts to contact each patient telephonically. If these calls were unsuccessful, home-based care workers attempted to locate the patient at the address on file. Based on the outcomes of these contact attempts, the patients were classified as lost to follow-up or retained in care. For the purpose of this study, “loss to follow-up” includes patients who died, who were contacted and reported that they had stopped ART, and who were uncontactable. “Retained in care“ includes patients who were active on ART, regardless of whether they were still at 1 of the 4 down-referral facilities or if they were seeking care elsewhere.

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Patient Characteristics

At the time of the audits, 3361 patients had been down referred to the 4 facilities. Seventy-one percent of patients were female. The mean age of patients was 38 years (IQR: 33–42), with males being slightly older than females (mean age 40 years and 37 years, respectively, P = 0.000) (Table 1).

The majority of patients (52.66%) were on the first-line regimen containing stavudine, lamivudine, and efavirenz (Regimen 1A), whereas 29.55% were on the nevirapine-containing first-line regimen (Regimen 1B). The mean baseline CD4 count of down-referred patients was 117.72 cells per microliter. On average, patients had received antiretroviral treatment at the initiation site for 1.56 years before being down referred (Table 1).

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Loss to Follow-up and Retention in Care

Of the 3361 down-referred patients, 95.45% (3208) were retained in ART care (Fig. 1). Of those retained in care, 97.0% (3112) were still active in the down-referral program and 3.0% (96) were receiving antiretrovirals at other locations Of the 96 patients who had left the down-referral program, but were still active on ART, 71 (73.96%) had transferred out to another care provider (ie, relocated or changed to private medical aid). Twenty-five of the 96 patients (20.83%) had gone back to the initiation sites after having been recorded as down referred.

Of 515 patients who had missed their appointments, 138 were classified as lost to follow-up by patient follow-up workers. Of these 138 patients, 7 were deceased, 15 reported that they had decided to stop taking ART, and 116 could not be traced by the patient follow-up workers—usually because of missing or incorrect contact details in the patients' files. The 15 patients who reported that they stopped taking ART gave the following reasons for stopping treatment: did not want to disclose to employer or time off work, relocation, personal problems, and challenges accessing care in the primary health care facilities (eg, given appointment on weekend date, told their file was destroyed, told to go elsewhere).

Most patients who were lost to follow-up were lost during the transfer stage. Of the 138 patients who were lost to follow-up, 81 (58.7%) never presented for their appointment at the maintenance PHC site, 14 (10.1%) only made a single visit to the maintenance site before being lost to follow-up, and 43 (31.2%) were lost after more than 1 visit to the maintenance site.

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The overall high retention in care in the down-referral program in inner city Johannesburg illustrates the acceptability and viability of a decentralized care model, which can decongest large antiretroviral initiation sites in resource constrained environments. However, the timing of loss to follow-up in our study group, whereby a large majority patients were lost to follow-up at the time of down transfer between the initiation and the maintenance sites, indicates that some patients may not be comfortable with being down-referred and that there may be gaps in the patient counseling at the time of down referral. It also highlights the need to closely track and follow-up with patients at the time of down referral.

The findings should be interpreted in light of several limitations. Due to the retrospective nature of the study, missing, illegible, or contradictory data could not be resolved. Patient files often had missing, incorrect, or outdated contact details, and as a result, a large number of missing patients could not be traced. Keeping up-to-date contact details is an ongoing challenge because patients often change cell phone numbers, share cell phones within families, and change residential addresses. Additionally, the files were often missing other essential information such as clinical visit notes and laboratory results. Improvement of record-keeping in the program would result in increased ability to trace patients. Also, the researchers were not able to ascertain if the criteria for down-referral criteria were followed by the initiation sites at the time of patient transfer.

In April 2010, along with updated eligibility and drug regimen guidelines, the South African National Department of Health issued a directive that ART services should be made available at all primary health care facilities and patients should be initiated and managed on ART by professional nurses, instead of doctors in line with the goals set out in the HIV and AIDS and STI Strategic Plan for South Africa, 2007–2011.23–26 This policy represents a true decentralization of services, in which patients will no longer need to be transferred between hospital sites and primary health facilities. The impact of this new model of care remains to be seen, but experts are hopeful that by reducing transfers within the system the model will improve access to and retention in care.

In a decentralized model of care several issues of sustainability must be considered. Shortage of health care workers is a constant pressure, and if nurses are to take on treatment of HIV in addition to their existing burden, then lay counselors and expert patients should be utilized to perform tasks such as finger-pricking for HIV tests, adherence counseling, and health education. Proper management is required to ensure that the burden of administrative work is shifted to data capturers and administrative clerks. Furthermore, reducing the frequency of patient visits by dispensing greater quantities of medication to well and adherent patients would reduce the burden on health care workers.

In conclusion, we found that a decentralized down-referral model of care had high retention of stable ART patients. The retention rates were better than the rates seen at initiation sites. Most of the loss to follow-up occurred at the time of transfer between initiation and maintenance sites, indicating a gap in services. Decentralization and nurse management of ART should be prioritized to increase access to and retention in HIV/AIDS care.

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We are grateful to the clinic staff for their dedication to serving patients and to the South African Department of Health for their ongoing collaboration to improve HIV/AIDS care and treatment.

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antiretroviral therapy; decentralization; loss to follow-up; retention; South Africa

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