Cost of using a patient tracer to reduce loss to follow-up and ascertain patient status in a large antiretroviral therapy program in Johannesburg, South Africa.

OBJECTIVE: To evaluate a pilot intervention to engage a patient tracer to follow up lost patients at a large public clinic in South Africa. METHODS: A social worker spent 4 months contacting by telephone a random sample of patients who had initiated antiretroviral therapy (ART) at least 6 months earlier and were >or=1 month late for a scheduled visit. The tracer was authorized to assist patients to return to care if needed. Cost was calculated from the perspective of the clinic. RESULTS: The tracer was able to determine the final status of 260 of a sample of 493 lost patients. Of the 260, 55 (21%) had died, 56 (21%) were still on ART at the same site, 79 (30%) reported transferring to another site and 70 (27%) had discontinued treatment. Among those discontinuing, commonly cited reasons were relocation (n = 18, 26%), traditional medicine or religious beliefs (n = 11, 16%), fear of disclosure or other family barriers (n = 9, 13%), and employment obstacles (n = 7, 10%). Twenty patients returned to care at the original site as a result of the intervention, at an average cost of $432 per patient returned. CONCLUSIONS: A patient tracer was an effective way to determine the final status of lost patients and succeeded in returning some to care, but the cost per patient returned was high. Better information systems allowing sites to track deaths and transfers would greatly improve the efficiency of loss to follow-up interventions.

Why are antiretroviral treatment patients lost to follow-up? A qualitative study from South Africa.

OBJECTIVES: To better understand the reasons why patients default from antiretroviral treatment (ART) programmes to help design interventions that improve treatment retention and ultimately, patient outcomes. METHODS: Prospective cohort study at two treatment sites in South Africa followed by qualitative interviews with patients that had defaulted. RESULTS: Respondents overwhelmingly reported that ART improved their health status and quality of life. Nevertheless, despite improved health from taking ART and worse health when treatment is stopped, serious barriers to treatment remained: transport costs, time needed for treatment, and logistical challenges were barriers to treatment, whereas stigma around HIV/AIDS, and side effects associated with ART were less influential. CONCLUSION: With a better understanding of the reasons for defaulting, interventions can be designed that improve treatment retention and ultimately, patient outcomes. This study argues for realistic interventions and policy changes designed to reduce the financial and time burden of ART and to reduce logistical barriers, such as simplifying the referral and transfer process, employing patient advocates, and adopting extended and weekend clinic hours.

Characteristics of patients accessing care and treatment for HIV/AIDS at public and nongovernmental sites in South Africa.

Little is known about the characteristics of patients accessing antiretroviral therapy (ART) in South Africa. In a random sample of 1069 pre-ART and ART patients attending an urban public hospital, a periurban nongovernmental organization (NGO) clinic, and a rural NGO clinic, 79% were female; average age was 34 for women and 37 for men. Two thirds reported having 1 long-term partner, but most did not live with their partner. Three fourths had completed some secondary school or higher; 47% were employed formally (26%) or informally (21%), and 40% lived in informal housing or shacks. Patients at the rural site were less likely to be employed and more likely to receive government grant support. Relative to the HIV-positive population as a whole, ART patients are older, more likely to be female and have 1 long-term partner, live in informal housing, have reached secondary school, and earn an income from formal or informal employment.

Economic outcomes of patients receiving antiretroviral therapy for HIV/AIDS in South Africa are sustained through three years on treatment.

BACKGROUND: Although the medical outcomes of antiretroviral therapy (ART) for HIV/AIDS are well described, less is known about how ART affects patients' economic activities and quality of life, especially after the first year on ART. We assessed symptom prevalence, general health, ability to perform normal activities, and employment status among adult antiretroviral therapy patients in South Africa over three full years following ART initiation. METHODOLOGY/PRINCIPAL FINDINGS: A cohort of 855 adult pre-ART patients and patients on ART for <6 months was enrolled and interviewed an average of 4.4 times each during routine clinic visits for up to three years after treatment initiation using an instrument designed for the study. The probability of pain in the previous week fell from 74% before ART initiation to 32% after three years on ART, fatigue from 66% to 12%, nausea from 28% to 4%, and skin problems from 55% to 10%. The probability of not feeling well physically yesterday fell from 46% to 23%. Before starting ART, 39% of subjects reported not being able to perform their normal activities sometime during the previous week; after three years, this proportion fell to 10%. Employment rose from 27% to 42% of the cohort. Improvement in all outcomes was sustained over 3 years and for some outcomes increased in the second and third year. CONCLUSIONS/SIGNIFICANCE: Improvements in adult ART patients' symptom prevalence, general health, ability to perform normal activities, and employment status were large and were sustained through the first three years on treatment. These results suggest that some of the positive economic and social externalities anticipated as a result of large-scale treatment provision, such as increases in workforce participation and productivity and the ability of patients to carry on normal lives, may indeed be accruing.

Differences in normal activities, job performance and symptom prevalence between patients not yet on antiretroviral therapy and patients initiating therapy in South Africa.

OBJECTIVES: Little is known about how antiretroviral therapy (ART) affects patients' economic activities in resource-constrained settings. This study examined the association of ART with functional impairment, symptom prevalence, and employment during the first 6 months on therapy. METHODS: Interviews were conducted with 453 patients receiving pre-ART care and 427 patients on ART for 1-6 months in South Africa. RESULTS: Pre-ART subjects were almost twice as likely to report being functionally impaired (unable to perform primary normal activity) in the previous 5-day work week [adjusted odds ratio (OR) 1.97; 95% confidence interval (CI) 1.46-2.66], with a mean of 1.61 impaired days for pre-ART subjects versus 0.87 days for ART subjects (P < 0.0001). Pre-ART subjects were more likely to report fatigue (OR 2.84; 95% CI 2.10-3.84), pain (OR 2.06; 95% CI 1.53-2.76), and nausea (OR 1.61; 95% CI 1.13-2.28) in the previous week and feeling unwell physically (OR 1.71; 95% CI 1.27-2.32), feeling depressed (OR 1.42; 95% CI 1.04-1.95) or resting (OR 1.52; 95% CI 1.12-2.07) on the previous day. The prevalence of pain, fatigue, skin problems, and resting exceeded 40% in both groups. Employed subjects on ART for 3-6 months reported 3 days less health-related absenteeism per month than those on ART less than 3 months (P = 0.0353). CONCLUSION: Patients who have initiated ART reported significantly less functional impairment, fewer symptoms, and better work performance than those who had not yet started treatment. The prevalence of some impairment, symptoms, and absenteeism remained high, however.

Cost to patients of obtaining treatment for HIV/AIDS in South Africa.

BACKGROUND: South Africa is providing antiretroviral (ARV) drugs for HIV/AIDS free of charge in order to increase access for poorer patients and promote adherence. However, non-drug costs of obtaining treatment may limit access. We estimated the costs that South African patients incur in obtaining antiretroviral therapy (ART). METHODS: A random sample of adult pre-ART and ART patients attending a public urban hospital (site 1), a peri-urban (informal settlement) non-governmental organisation (NGO) clinic (site 2), and a rural NGO clinic (site 3) were interviewed during a routine clinic visit. Mean and median costs were calculated for each site. RESULTS: Ninety-one per cent of subjects paid for transport to attend the clinic. The median cost was modest (R10 - R28), but patients in the top decile at sites 1 and 3 paid R50 or more. Mean transport costs were substantially higher at site 1 (R75) than at site 2 (R18) or Site 3 (R47). Site 1 waived its R45 visit fee for most subjects, but more than 80% of subjects at sites 2 and 3 paid fees of R30 and R70, respectively. Few subjects at any site paid for substitute labour (7%) or suffered income loss (12%) during the visit. In the previous week, 60% of all subjects purchased non-prescription medicines or special foods, at a median cost of R81, R45 and R50 for sites 1, 2 and 3, respectively. The upper quartile of patients paid more than R150 for these purchases. Twelve per cent of patients reported paying for other medical care in the previous week, while 48% said that they had utilised caretakers' time. CONCLUSIONS: Patients must visit a treatment clinic at least 6 times in the year in which they start ART. The average cost per visit is R120, plus travel and waiting time. Patients and caregivers also spend considerable time and money between visits. Patient costs should be considered in efforts to sustain adherence and expand access.