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1.  Failure to Initiate Antiretroviral Therapy, Loss to Follow-up and Mortality among HIV-infected Patients during the Pre-ART period in Uganda 
Background
Delays and failures in initiation of antiretroviral therapy (ART) among treatment eligible patients may compromise the effectiveness of HIV care in Africa. An accurate understanding, however, of the pace and completeness of ART initiation and mortality during the waiting period is obscured by frequent losses to follow-up.
Methods
We evaluated newly ART-eligible HIV-infected adults from 2007 to 2011 in a prototypical clinic in Mbarara, Uganda. A random sample of patients lost to follow-up was tracked in the community to determine vital status and ART initiation after leaving the original clinic. Outcomes among the tracked patients were incorporated using probability weights, and a competing risks approach was used in analyses.
Results
Among 2,633 ART-eligible patients, 490 were lost to follow-up, of whom a random sample of 132 was tracked and 111 (84.0%) had outcomes ascertained. After incorporating the outcomes among the lost, the cumulative incidence of ART initiation at 30, 90 and 365 days after eligibility was 16.0% (95% CI: 14.2–17.7), 64.5% (95% CI: 60.9–68.1), and 81.7% (95% CI: 77.7–85.6). Death prior to ART was 7.7% at one year. Male sex, higher CD4 count, and no education were associated with delayed ART initiation. Lower CD4 level, malnourishment and travel time to clinic were associated with mortality.
Conclusions
Using a sampling-based approach to account for losses to follow-up revealed that both the speed and completeness of ART initiation were sub-optimal in a prototypical large clinic in Uganda. Improving the kinetics of ART initiation in Africa is needed to make ART optimally effective.
doi:10.1097/QAI.0b013e31828af5a6
PMCID: PMC3654002  PMID: 23429504
Antiretroviral therapy; Africa; loss to follow-up; mortality
2.  Toward an Understanding of Disengagement from HIV Treatment and Care in Sub-Saharan Africa: A Qualitative Study 
PLoS Medicine  2013;10(1):e1001369.
Norma Ware and colleagues conducted a large qualitative study among patients in HIV treatment programs in sub-Saharan Africa to investigate reasons for missed visits and provide an explanation for disengagement from care.
Background
The rollout of antiretroviral therapy in sub-Saharan Africa has brought lifesaving treatment to millions of HIV-infected individuals. Treatment is lifelong, however, and to continue to benefit, patients must remain in care. Despite this, systematic investigations of retention have repeatedly documented high rates of loss to follow-up from HIV treatment programs. This paper introduces an explanation for missed clinic visits and subsequent disengagement among patients enrolled in HIV treatment and care programs in Africa.
Methods and Findings
Eight-hundred-ninety patients enrolled in HIV treatment programs in Jos, Nigeria; Dar es Salaam, Tanzania; and Mbarara, Uganda who had extended absences from care were tracked for qualitative research interviews. Two-hundred-eighty-seven were located, and 91 took part in the study. Interview data were inductively analyzed to identify reasons for missed visits and to assemble them into a broader explanation of how missed visits may develop into disengagement. Findings reveal unintentional and intentional reasons for missing, along with reluctance to return to care following an absence. Disengagement is interpreted as a process through which missed visits and ensuing reluctance to return over time erode patients' subjective sense of connectedness to care.
Conclusions
Missed visits are inevitable over a lifelong course of HIV care. Efforts to prevent missed clinic visits combined with moves to minimize barriers to re-entry into care are more likely than either approach alone to keep missed visits from turning into long-term disengagement.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
The human immunodeficiency virus (HIV) infects cells of the immune system, destroying or impairing their function. As the infection progresses, the immune system becomes weaker, and the affected person becomes more susceptible to life-threatening infections. Over the past three decades, 25 million people have died from HIV, and according to the World Health Organization, in 2011, there were roughly 34.2 million people living with HIV, over 60% of whom lived in sub-Saharan Africa. Although HIV cannot be cured, the virus can be suppressed by combination antiretroviral therapy (ART) consisting of three or more antiretroviral drugs. ART controls viral replication and strengthens the immune system, allowing the affected person to fight off infections. With ART, HIV can be managed as a chronic disease: people living with HIV can live healthy lives as long as they take antiretroviral drugs regularly for the rest of their lives.
Why Was This Study Done?
Unfortunately, poor retention in HIV programs is a huge problem: a large proportion—30%–60% in some settings in sub-Saharan Africa—of people starting ART, are lost to follow-up and stop taking treatment. Few studies have looked in depth at the reasons why people with HIV in sub-Saharan Africa miss clinic appointments or even stop coming altogether. So in this study in Tanzania, Uganda, and Nigeria, the researchers did a qualitative analysis from the patients' perspective on the reasons for missing clinic visits. Qualitative research can use information-gathering techniques, such as open-ended interviews, to develop an in-depth understanding of human behavior and the reasons behind such behavior.
What Did the Researchers Do and Find?
The researchers indentified people to interview by using “tracking lists” from HIV/AIDS care clinics in the three countries—patient tracking by clinical trackers is increasingly used as a way to contact patients who have missed clinic appointments. The researchers included people in the study who had been tracked and contacted by clinic trackers, had been absent from the clinic for three months or more, and gave consent to be re-contacted by the researchers. The researchers interviewed participants, using their local language, on several topics, including their experiences of care at the clinic and of tracking, and the circumstances of missed appointments. The detailed accounts were transcribed, and then the researchers categorized the reasons for missing appointments into intentional and unintentional reasons.
Eight-hundred-ninety patients in the three countries were tracked during the study period, but only 287 were located, of whom 91 participated in the study. Of the 91 participants, 76 were being prescribed ART, and 15 had not started treatment. The main unintentional reason for missing clinic visits was a conflicting demand on the patients' time, which was often unexpected and for complex reasons, such as caring for a dying relative, going to a funeral, or traveling to work. These reasons were often transient and changed over time. Intentional reasons were often related to dissatisfaction with the care received at the clinic, especially “the harsh treatment” they received from health workers, which typically referred to behavior perceived by patients to be rude. For example, participants reported being spoken to “roughly” or feeling that the clinic staff “didn't care.” Such behavior made patients feel hurt, humiliated, and angry, and reluctant to return to the clinic. The researchers found that, overall, disengagement from care appeared to be a process through which missed visits and subsequent reluctance to return over time eroded patients' sense of connectedness to care.
What Do These Findings Mean?
Absences from care will be inevitable over a lifetime course of treatment for HIV/AIDS. These findings indicate that absences may be unintentional as well as intentional, and that the reasons are complex and can change over time. Initial reasons for missing may disappear, leaving patients free, but reluctant, to return to care. Reasons for reluctance include shame at having been absent and the anticipation of a negative response to return from care providers. Patient education for ART initiation in sub-Saharan Africa often includes stern warnings about the lifelong commitment beginning ART represents. Paradoxically, educational efforts intended to maximize the benefits of ART for patients may be driving some away from care. Therefore, efforts to prevent missed clinic visits coupled with strategies to minimize any obstacles to coming back to care are necessary to keep patients' missed visits from turning into long-term disengagement from treatment.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001369.
This study is further discussed in a PLOS Medicine Perspective by Edward Mills
The World Health Organization has the latest data on access to ART
The US National Institute of Allergy and Infectious Diseases has more information on types of ART, and also on adherence to treatment
The US Centers for Disease Control and Prevention has some information about interventions to help improve adherence
doi:10.1371/journal.pmed.1001369
PMCID: PMC3541407  PMID: 23341753
3.  Contraceptive Use and Associated Factors among Women Enrolling into HIV Care in Southwestern Uganda 
Background. Preventing unintended pregnancies among women living with HIV is an important component of prevention of mother-to-child HIV transmission (PMTCT), yet few data exist on contraceptive use among women entering HIV care. Methods. This was a retrospective study of electronic medical records from the initial HIV clinic visits of 826 sexually active, nonpregnant, 18–49-year old women in southwestern Uganda in 2009. We examined whether contraceptive use was associated with HIV status disclosure to one's spouse. Results. The proportion reporting use of contraception was 27.8%. The most common method used was injectable hormones (51.7%), followed by condoms (29.6%), and oral contraceptives (8.7%). In multivariable analysis, the odds of contraceptive use were significantly higher among women reporting secondary education, higher income, three or more children, and younger age. There were no significant independent associations between contraceptive use and HIV status disclosure to spouse. Discussion. Contraceptive use among HIV-positive females enrolling into HIV care in southwestern Uganda was low. Our results suggest that increased emphasis should be given to increase the contraception uptake for all women especially those with lower education and income. HIV clinics may be prime sites for contraception education and service delivery integration.
doi:10.1155/2012/340782
PMCID: PMC3469089  PMID: 23082069
6.  Tracking a Sample of Patients Lost to Follow-up has a Major Impact on Understanding Determinants of Survival in HIV-infected Patients on Antiretroviral Therapy in Africa 
Background
To date, data regarding the determinants of mortality in HIV-infected patients starting antiretroviral therapy (ART) in Africa have been primarily derived from routine clinical care settings practicing the “public health approach.” Losses to follow-up, however, are high in these settings and may lead to bias in understanding the determinants of mortality.
Methods
We evaluated HIV-infected adults initiating ART between January 1, 2004 and September 30, 2007 in an ART clinic in southwestern Uganda. Clinical and demographic characteristics were obtained through routine clinical care. In evaluating determinants of mortality, a “naïve” analysis used only deaths known through routine processes. A “sample-corrected” approach incorporated, through probability weights, outcomes from a representative sample of patients lost to follow-up whose vital status was ascertained through tracking in the community.
Results
In 3,628 patients followed for up to 3.75 years after ART initiation, the “naïve” approach identified male sex and lower pre-ART CD4 count as independent determinants of mortality. The “sample-corrected” approach found lower pre-ART CD4 count, older age, lower weight and calendar year of ART initiation, but not male sex, to be independent determinants of mortality.
Conclusions
Analyses to identify determinants of mortality in HIV-infected patients on ART in Africa that do not account for losses to follow-up can identify spurious associations and miss actual relationships – both with the potential to mislead public health efforts. A sampling-based approach to account for losses to follow-up represents a feasible and potentially scalable method to strengthen the evidence available for implementation of ART delivery in Africa.
doi:10.1111/j.1365-3156.2010.02507.x
PMCID: PMC3038920  PMID: 20586962
antiretroviral scale-up strategies; losses to follow-up; determinants of mortality on antiretroviral therapy; sampling studies; monitoring and evaluation; Africa
7.  Diminishing Availability of Publicly Funded Slots for Antiretroviral Initiation among HIV-Infected ART-Eligible Patients in Uganda 
PLoS ONE  2010;5(11):e14098.
Background
The impact of flat-line funding in the global scale up of antiretroviral therapy (ART) for HIV-infected patients in Africa has not yet been well described.
Methods
We evaluated ART-eligible patients and patients starting ART at a prototypical scale up ART clinic in Mbarara, Uganda between April 1, 2009 and May 14, 2010 where four stakeholders sponsor treatment – two PEPFAR implementing organizations, the Ugandan Ministry of Health – Global Fund (MOH-GF) and a private foundation named the Family Treatment Fund (FTF). We assessed temporal trends in the number of eligible patients, the number starting ART and tabulated the distribution of the stakeholders supporting ART initiation by month and quartile of time during this interval. We used survival analyses to assess changes in the rate of ART initiation over calendar time.
Findings
A total of 1309 patients who were eligible for ART made visits over the 14 month period of the study and of these 819 started ART. The median number of ART eligible patients each month was 88 (IQR: 74 to 115). By quartile of calendar time, PEPFAR and MOH sponsored 290, 192, 180, and 49 ART initiations whereas the FTF started 1, 2, 1 and 104 patients respectively. By May of 2010 (the last calendar month of observation) FTF sponsored 88% of all ART initiations. Becoming eligible for ART in the 3rd (HR = 0.58, 95% 0.45–0.74) and 4th quartiles (HR = 0.49, 95% CI: 0.36–0.65) was associated with delay in ART initiation compared to the first quartile in multivariable analyses.
Interpretation
During a period of flat line funding from multinational donors for ART programs, reductions in the number of ART initiations by public programs (i.e., PEPFAR and MOH-GF) and delays in ART initiation became apparent at the a large prototypical scale-up ART clinic in Uganda.
doi:10.1371/journal.pone.0014098
PMCID: PMC2991339  PMID: 21124842
8.  Late disease stage at presentation to an HIV clinic in the era of free antiretroviral therapy in sub-Saharan Africa 
Background
Access to free antiretroviral therapy (ART) in sub-Saharan Africa has been steadily increasing, and the success of large-scale ART programs depends on early initiation of HIV care. However, little is known about the stage at which those infected with HIV present for treatment in sub-Saharan Africa.
Methods
We conducted a cross-sectional analysis of initial visits to the Immune Suppression Syndrome Clinic of the Mbarara University Teaching Hospital, including patients who had their initial visit between February 2007 and February 2008 (N=2311).
Results
Median age was 33 years (range 16–81). 64% were female. Over one-third (40%) were categorized as late presenters, that is World Health Organization disease stage 3 or 4. Male gender, age 46 to 60 (versus younger), lower education level, being unemployed, living in a household with others, being unmarried, and lack of spousal HIV status disclosure were independently associated with late presentation, while being pregnant, having young children, and consuming alcohol in the prior year were associated with early presentation.
Conclusions
Targeted public health interventions to facilitate earlier entry into HIV care are needed, as well as additional study to determine whether late presentation is due to delays in testing versus delays in accessing care.
doi:10.1097/QAI.0b013e3181ab6eab
PMCID: PMC2815238  PMID: 19521248
Antiretroviral therapy; access; sub-Saharan Africa; late presentation

Results 1-8 (8)