Data challenges for international health emergencies: lessons learned from ten international COVID-19 driver projects.

The COVID-19 pandemic highlighted the importance of international data sharing and access to improve health outcomes for all. The International COVID-19 Data Alliance (ICODA) programme enabled 12 exemplar or driver projects to use existing health-related data to address major research questions relating to the pandemic, and developed data science approaches that helped each research team to overcome challenges, accelerate the data research cycle, and produce rapid insights and outputs. These approaches also sought to address inequity in data access and use, test approaches to ethical health data use, and make summary datasets and outputs accessible to a wider group of researchers. This Health Policy paper focuses on the challenges and lessons learned from ten of the ICODA driver projects, involving researchers from 19 countries and a range of health-related datasets. The ICODA programme reviewed the time taken for each project to complete stages of the health data research cycle and identified common challenges in areas such as data sharing agreements and data curation. Solutions included provision of standard data sharing templates, additional data curation expertise at an early stage, and a trusted research environment that facilitated data sharing across national boundaries and reduced risk. These approaches enabled the driver projects to rapidly produce research outputs, including publications, shared code, dashboards, and innovative resources, which can all be accessed and used by other research teams to address global health challenges.

Using electronic medical records to understand the impact of SARS-CoV-2 lockdown measures on maternal and neonatal outcomes in Kampala, Uganda.

Kawempe National Referral Hospital (KNRH) is a tertiary facility with over 21,000 pregnant or postpartum women admitted annually. The hospital, located in Kampala, Uganda, uses an Electronic Medical Records (EMR) system to capture patient data. Used since 2017, this readily available electronic health record (EHR) has the benefit of informing real-time clinical care, especially during pandemics such as COVID-19. We investigated the use of EHR to assess risk factors for adverse pregnancy and infant outcomes that can be incorporated into a data visualization dashboard for real time decision making during pandemics. This study analysed data from the UgandaEMR collected at pre-, during- and post-lockdown timepoints of the COVID-19 pandemic to determine its use in monitoring risk factors for adverse pregnancy and neonatal outcomes. Logistic regression models were used to identify the risk factors for adverse pregnancy and maternal outcomes including prematurity, obstetric complications, still births and neonatal deaths. Pearson chi-square test was used for pair-wise comparison of the outcomes at the various stages of the pandemic. Data analysis was performed in R, within the International COVID-19 Data Alliance (ICODA) workbench. A visualisation dashboard was developed based on the risk factors, to support decision making and improved healthcare delivery. Comparison of pre-and post-lockdown variables showed an increased risk of pre-term birth (adjusted Odds Ratio (aOR = 1.67, 95% confidence interval (CI) 1.38-2.01)); obstetric complications (aOR = 2.77, 95% CI: 2.53-3.03); immediate neonatal death (aOR = 3.89, 95% CI 2.65-5.72) and Caesarean section (aOR = 1.22, 95% CI 1.11-1.34). The significant risk factors for adverse outcomes were younger maternal age and gestational age <32weeks at labour. This study demonstrates the feasibility of using EHR to identify and monitor at-risk subpopulation groups accessing health services in real time. This information is critical for the development of timely and appropriate interventions in outbreaks and pandemic situations.

SARS-CoV-2 seroprevalence among blood donors in Uganda: 2019-2022.

BACKGROUND: The true burden of COVID-19 in low- and middle-income countries remains poorly characterized, especially in Africa. Even prior to the availability of SARS-CoV-2 vaccines, countries in Africa had lower numbers of reported COVID-19 related hospitalizations and deaths than other regions globally. METHODS: Ugandan blood donors were evaluated between October 2019 and April 2022 for IgG antibodies to SARS-CoV-2 nucleocapsid (N), spike (S), and five variants of the S protein using multiplexed electrochemiluminescence immunoassays (MesoScale Diagnostics, Rockville, MD). Seropositivity for N and S was assigned using manufacturer-provided cutoffs and trends in seroprevalence were estimated by quarter. Statistically significant associations between N and S antibody seropositivity and donor characteristics in November-December 2021 were assessed by chi-square tests. RESULTS: A total of 5393 blood unit samples from donors were evaluated. N and S seropositivity increased throughout the pandemic to 82.6% in January-April 2022. Among seropositive individuals, N and S antibody levels increased ≥9-fold over the study period. In November-December 2021, seropositivity to N and S antibody was higher among repeat donors (61.3%) compared with new donors (55.1%; p = .043) and among donors from Kampala (capital city of Uganda) compared with rural regions (p = .007). Seropositivity to S antibody was significantly lower among HIV-seropositive individuals (58.8% vs. 84.9%; p = .009). CONCLUSIONS: Despite previously reported low numbers of COVID-19 cases and related deaths in Uganda, high SARS-CoV-2 seroprevalence and increasing antibody levels among blood donors indicated that the country experienced high levels of infection over the course of the pandemic.

Twenty years of Prevention of Mother to Child HIV Transmission: research to implementation at a national referral hospital in Uganda.

Background: Over 90% of new paediatric HIV infections are acquired through mother to child transmission. Prevention of mother to child HIV transmission (PMTCT) research in sub-Saharan Africa informed WHO guidelines which enabled implementation of PMTCT programs globally. Objectives: To describe Makerere University-Johns Hopkins University (MU-JHU) perinatal HIV prevention research and implementation of the Mulago National Referral Hospital (MNRH) PMTCT program. Methods: Perinatal HIV prevention studies conducted at MU-JHU between 1997-2016 were summarized. Program aggregated data was extracted and analyzed using STATA 15. Results: In 1999, the HIVNET 012 study demonstrated that single-dose nevirapine (sdNVP) to the mother at onset of labor and to her newborn, reduced MTCT by nearly 50%. In 2016, the PROMISE study documented the safety and efficacy of ART during pregnancy and breastfeeding period. Program implementation at MNRH started in 2000. Uptake of HIV testing increased from 70% to 99% from 2006 onwards. sd NVP was the initial ARV regimen but by 2012, MOH recommended Option B+(triple therapy). MTCT rates reduced from 16.9% in 2001 to 2.3% in 2020. Conclusion: Perinatal HIV prevention clinical trials conducted at MU-JHU provided evidence to inform WHO PMTCT guidelines. MNRH program evaluation demonstrated the significant decline in MTCT rates over the last two decades.

The Mirasol Evaluation of Reduction in Infections Trial (MERIT): study protocol for a randomized controlled clinical trial.

BACKGROUND: Transfusion-transmitted infections (TTIs) are a global health challenge. One new approach to reduce TTIs is the use of pathogen reduction technology (PRT). In vitro, Mirasol PRT reduces the infectious load in whole blood (WB) by at least 99%. However, there are limited in vivo data on the safety and efficacy of Mirasol PRT. The objective of the Mirasol Evaluation of Reduction in Infections Trial (MERIT) is to investigate whether Mirasol PRT of WB can prevent seven targeted TTIs (malaria, bacteria, human immunodeficiency virus, hepatitis B virus, hepatitis C virus, hepatitis E virus, and human herpesvirus 8). METHODS: MERIT is a randomized, double-blinded, controlled clinical trial. Recruitment started in November 2019 and is expected to end in 2024. Consenting participants who require transfusion as medically indicated at three hospitals in Kampala, Uganda, will be randomized to receive either Mirasol-treated WB (n = 1000) or standard WB (n = 1000). TTI testing will be performed on donor units and recipients (pre-transfusion and day 2, day 7, week 4, and week 10 after transfusion). The primary endpoint is the cumulative incidence of one or more targeted TTIs from the Mirasol-treated WB vs. standard WB in a previously negative recipient for the specific TTI that is also detected in the donor unit. Log-binomial regression models will be used to estimate the relative risk reduction of a TTI by 10 weeks associated with Mirasol PRT. The clinical effectiveness of Mirasol WB compared to standard WB products in recipients will also be evaluated. DISCUSSION: Screening infrastructure for TTIs in low-resource settings has gaps, even for major TTIs. PRT presents a fast, potentially cost-effective, and easy-to-use technology to improve blood safety. MERIT is the largest clinical trial designed to evaluate the use of Mirasol PRT for WB. In addition, this trial will provide data on TTIs in Uganda. TRIAL REGISTRATION: Mirasol Evaluation of Reduction in Infections Trial (MERIT) NCT03737669 . Registered on 9 November 2018.

Model-based small area estimation methods and precise district-level HIV prevalence estimates in Uganda.

BACKGROUND: Model-based small area estimation methods can help generate parameter estimates at the district level, where planned population survey sample sizes are not large enough to support direct estimates of HIV prevalence with adequate precision. We computed district-level HIV prevalence estimates and their 95% confidence intervals for districts in Uganda. METHODS: Our analysis used direct survey and model-based estimation methods, including Fay-Herriot (area-level) and Battese-Harter-Fuller (unit-level) small area models. We used regression analysis to assess for consistency in estimating HIV prevalence. We use a ratio analysis of the mean square error and the coefficient of variation of the estimates to evaluate precision. The models were applied to Uganda Population-Based HIV Impact Assessment 2016/2017 data with auxiliary information from the 2016 Lot Quality Assurance Sampling survey and antenatal care data from district health information system datasets for unit-level and area-level models, respectively. RESULTS: Estimates from the model-based and the direct survey methods were similar. However, direct survey estimates were unstable compared with the model-based estimates. Area-level model estimates were more stable than unit-level model estimates. The correlation between unit-level and direct survey estimates was (ß1 = 0.66, r2 = 0.862), and correlation between area-level model and direct survey estimates was (ß1 = 0.44, r2 = 0.698). The error associated with the estimates decreased by 37.5% and 33.1% for the unit-level and area-level models, respectively, compared to the direct survey estimates. CONCLUSIONS: Although the unit-level model estimates were less precise than the area-level model estimates, they were highly correlated with the direct survey estimates and had less standard error associated with estimates than the area-level model. Unit-level models provide more accurate and reliable data to support local decision-making when unit-level auxiliary information is available.

Indirect effects of COVID-19 on maternal, neonatal, child, sexual and reproductive health services in Kampala, Uganda.

BACKGROUND: COVID-19 impacted global maternal, neonatal and child health outcomes. We hypothesised that the early, strict lockdown that restricted individuals' movements in Uganda limited access to services. METHODS: An observational study, using routinely collected data from Electronic Medical Records, was carried out, in Kawempe district, Kampala. An interrupted time series analysis assessed the impact on maternal, neonatal, child, sexual and reproductive health services from July 2019 to December 2020. Descriptive statistics summarised the main outcomes before (July 2019-March 2020), during (April 2020-June 2020) and after the national lockdown (July 2020-December 2020). RESULTS: Between 1 July 2019 and 31 December 2020, there were 14 401 antenatal clinic, 33 499 deliveries, 111 658 childhood service and 57 174 sexual health attendances. All antenatal and vaccination services ceased in lockdown for 4 weeks.During the 3-month lockdown, the number of antenatal attendances significantly decreased and remain below pre-COVID levels (370 fewer/month). Attendances for prevention of mother-to-child transmission of HIV dropped then stabilised. Increases during lockdown and immediately postlockdown included the number of women treated for high blood pressure, eclampsia and pre-eclampsia (218 more/month), adverse pregnancy outcomes (stillbirths, low-birth-weight and premature infant births), the rate of neonatal unit admissions, neonatal deaths and abortions. Maternal mortality remained stable. Immunisation clinic attendance declined while neonatal death rate rose (from 39 to 49/1000 livebirths). The number of children treated for pneumonia, diarrhoea and malaria decreased during lockdown. CONCLUSION: The Ugandan response to COVID-19 negatively impacted maternal, child and neonatal health, with an increase seen in pregnancy complications and fetal and infant outcomes, likely due to delayed care-seeking behaviour. Decreased vaccination clinic attendance leaves a cohort of infants unprotected, affecting all vaccine-preventable diseases. Future pandemic responses must consider impacts of movement restrictions and access to preventative services to protect maternal and child health.

Difference in HIV prevalence by testing venue: results from population level survey in Uganda.

Growing demand for use of Health Facility (HF) HIV testing data, in addition to other testing data to obtain district level HIV prevalence requires understanding the comparability of these various sources. We analysed the 2011 Uganda AIDS indicator survey data to assess: the proportion of people tested for HIV across Uganda by venue of testing; HIV prevalence ratio for those tested in a HF compared to those tested in community setting; [Katz, D., Baptista, J., Azen, S. P., & Pike, M. C. (1978). Obtaining confidence intervals for the risk ratio in cohort studies. International Biometric Society, 34(3), 469-474. https://doi.org/10.2307/2530610] and factors associated with HIV positivity in each subgroup. Of the 11,685 individuals, 8978 (77.1%) had ever tested for HIV in a HF. Fifty nine per cent tested in a HF in the 12 months preceding the survey (female: 5507, 72.7% versus male: 1413, 34.9%). HIV prevalence ratio was 1.8 times among those tested in a HF compared to those tested at community setting (10.9% [95% CI: 10.0-11.7] versus 6.2% [95% CI: 5.4-7.0]). Among HF testers, older age group, previously married and having no sexual partner was associated with significantly higher HIV prevalence. Using facility testing data for planning and decisions should take into consideration the elevated and varying HIV prevalence among individuals accessing HIV testing services at HFs as well as differences in their social-demographic characteristics.

Combining national survey with facility-based HIV testing data to obtain more accurate estimate of HIV prevalence in districts in Uganda.

BACKGROUND: National or regional population-based HIV prevalence surveys have small sample sizes at district or sub-district levels; this leads to wide confidence intervals when estimating HIV prevalence at district level for programme monitoring and decision making. Health facility programme data, collected during service delivery is widely available, but since people self-select for HIV testing, HIV prevalence estimates based on it, is subject to selection bias. We present a statistical annealing technique, Hybrid Prevalence Estimation (HPE), that combines a small population-based survey sample with a facility-based sample to generate district level HIV prevalence estimates with associated confidence intervals. METHODS: We apply the HPE methodology to combine the 2011 Uganda AIDS indicator survey with the 2011 health facility HIV testing data to obtain HIV prevalence estimates for districts in Uganda. Multilevel logistic regression was used to obtain the propensity of testing for HIV in a health facility, and the propensity to test was used to combine the population survey and health facility HIV testing data to obtain the HPEs. We assessed comparability of the HPEs and survey-based estimates using Bland Altman analysis. RESULTS: The estimates ranged from 0.012 to 0.178 and had narrower confidence intervals compared to survey-based estimates. The average difference between HPEs and population survey estimates was 0.00 (95% CI: - 0.04, 0.04). The HPE standard errors were 28.9% (95% CI: 23.4-34.4) reduced, compared to survey-based standard errors. Overall reduction in HPE standard errors compared survey-based standard errors ranged from 5.4 to 95%. CONCLUSIONS: Facility data can be combined with population survey data to obtain more accurate HIV prevalence estimates for geographical areas with small population survey sample sizes. We recommend use of the methodology by district level managers to obtain more accurate HIV prevalence estimates to guide decision making without incurring additional data collection costs.

Effect of a Mentor Mother Programme on retention of mother-baby pairs in HIV care: A secondary analysis of programme data in Uganda.

BACKGROUND: Community healthcare workers (CHWs) play an important role in promoting HIV-care retention. Notwithstanding inconsistencies in the outcomes of CHW programmes, these programmes are known to have a positive effect on retention of mother-baby pairs in HIV-care in sub-Saharan Africa. AIM: The aim of this analysis was to assess the effect of mothers2mothers (m2m) Ugandan Mentor Mother (MM) programme on the retention of mother-baby pairs in HIV-care. METHODS: We conducted a secondary analysis of data obtained from the m2m Uganda MM programme in nine East Central districts. The primary data was generated through a quasi-experimental study of women attending prevention of mother to child transmission of HIV (PMTCT) clinics in Uganda between January 2011 and March 2014; where those who were enrolled at PMTCT sites with the MM intervention (n = 1161) were compared with those who received standard PMCTCT services without the MM intervention (n = 1143). Frequencies and descriptive statistics were calculated for categorical and continuous measures respectively. Risk factors for retention in care were determined by clustered generalised estimating equations and reported as adjusted odds ratios (AOR) with 95% confidence intervals (95% CI). RESULTS: Retention in the PMTCT cascade was significantly higher for mother-baby pairs in the intervention arm compared to those in the control arm across all measured time points (96.7% vs 65.8% at 6 weeks after birth, p<0.001; 81.5% vs 42% at 6 weeks after cessation of breastfeeding, p<0.001; and 71.2% vs 20.6% at 18 months after birth, p<0.001). Relative to the control group, women in the intervention group were less likely to be lost to follow up following treatment initiation (AOR 0.05, 95% CI: 0.02, 0.15). There was no difference in the proportion of the retained mother-baby pairs who received prescribed PMTCT interventions at different time points but a significantly higher number of mother-baby pairs in the intervention arm were retained at different time points. CONCLUSION: HIV positive mothers and their HIV exposed children in the mothers2mothers Ugandan Mentor Mother programme had higher retention in HIV care at every step along the PMTCT cascade. We therefore recommend adoption of this peer-to-peer model in sub-Saharan Africa to complement retention in care strategies and health system interventions especially among priority and key populations.

Assessing delivery practices of mothers over time and over space in Uganda, 2003-2012.

BACKGROUND: It is well known that safe delivery in a health facility reduces the risks of maternal and infant mortality resulting from perinatal complications. What is less understood are the factors associated with safe delivery practices. We investigate factors influencing health facility delivery practices while adjusting for multiple other factors simultaneously, spatial heterogeneity, and trends over time. METHODS: We fitted a logistic regression model to Lot Quality Assurance Sampling (LQAS) data from Uganda in a framework that considered individual-level covariates, geographical features, and variations over five time points. We accounted for all two-covariate interactions and all three-covariate interactions for which two of the covariates already had a significant interaction, were able to quantify uncertainty in outputs using computationally intensive cluster bootstrap methods, and displayed outputs using a geographical information system. Finally, we investigated what information could be predicted about districts at future time-points, before the next LQAS survey is carried out. To do this, we applied the model to project a confidence interval for the district level coverage of health facility delivery at future time points, by using the lower and upper end values of known demographics to construct a confidence range for the prediction and define priority groups. RESULTS: We show that ease of access, maternal age and education are strongly associated with delivery in a health facility; after accounting for this, there remains a significant trend towards greater uptake over time. We use this model together with known demographics to formulate a nascent early warning system that identifies candidate districts expected to have low prevalence of facility-based delivery in the immediate future. CONCLUSIONS: Our results support the hypothesis that increased development, particularly related to education and access to health facilities, will act to increase facility-based deliveries, a factor associated with reducing perinatal associated mortality. We provide a statistical method for using inexpensive and routinely collected monitoring and evaluation data to answer complex epidemiology and public health questions in a resource-poor setting. We produced a model based on this data that explained the spatial distribution of facility-based delivery in Uganda. Finally, we used this model to make a prediction about the future priority of districts that was validated by monitoring and evaluation data collected in the next year.

Longitudinal household surveillance for malaria in Rakai, Uganda.

BACKGROUND: HIV and malaria exert co-pathogenic effects. Malaria surveillance data are necessary for public health strategies to reduce the burden of disease in high HIV prevalence settings. METHODS: This was a longitudinal cohort study to assess the burden of malaria in rural Rakai, Uganda. Households were visited monthly for 1 year to identify confirmed clinical malaria (CCM), or parasitaemia with temperature >37.5 °C, and asymptomatic parasitaemia (AP). Interviews of the adult or child's caregiver and clinical and laboratory assessments were conducted. Rapid diagnostic testing for malaria and anaemia was performed if participants were febrile and anti-malarial treatment given per Uganda Ministry of Health 2010 guidelines. Blood was drawn at every household visit to assess for parasitaemia, and blood smears were assessed at the Rakai Health Science Programme laboratory. RESULTS: A total of 1640 participants were enrolled, including 975 children aged 6 months up to 10 years, 393 adult caregivers, and 272 adolescent/adult household members from 393 randomly selected households in two representative communities. 1459 (89 %) participants completed all study visits. CCM was identified in 304 (19 %) participants, with the highest incidence rate for CCM of 0.38 per person-year (ppy) identified in children <5 years, and rates decreased with age; the rates were 0.27, 0.16, and 0.09 ppy for ages 5-<10 years, 10-<18 years, and adults 18+ years, respectively. AP was identified in 943 (57 %) participants; the incidence rate was 1.99 ppy for <5 years, 2.72 ppy for 5-<10 years, 2.55 ppy for 10-<18 years, and 0.86 ppy among adults, with 92 % of cases being attributed to Plasmodium falciparum by smear. 994 (61 %) individuals had at least one positive smear; 342 (21 %) had one positive result, 203 (12 %) had two, 115 (7 %) had three, and 334 (21 %) had >3 positive smears during follow-up. Seasonal rates generally followed the rains and peaked during July, then decreased through November before increasing again. CONCLUSIONS: Plasmodium falciparum infection remains high in rural Uganda. Increased malaria control interventions should be prioritized. Trial registration Clinicaltrials.gov identifier NCT01265407.

Associations with HIV testing in Uganda: an analysis of the Lot Quality Assurance Sampling database 2003-2012.

Beginning in 2003, Uganda used Lot Quality Assurance Sampling (LQAS) to assist district managers collect and use data to improve their human immunodeficiency virus (HIV)/AIDS program. Uganda's LQAS-database (2003-2012) covers up to 73 of 112 districts. Our multidistrict analysis of the LQAS data-set at 2003-2004 and 2012 examined gender variation among adults who ever tested for HIV over time, and attributes associated with testing. Conditional logistic regression matched men and women by community with seven model effect variables. HIV testing prevalence rose from 14% (men) and 12% (women) in 2003-2004 to 62% (men) and 80% (women) in 2012. In 2003-2004, knowing the benefits of testing (Odds Ratio [OR] = 6.09, 95% CI = 3.01-12.35), knowing where to get tested (OR = 2.83, 95% CI = 1.44-5.56), and secondary education (OR = 3.04, 95% CI = 1.19-7.77) were significantly associated with HIV testing. By 2012, knowing the benefits of testing (OR = 3.63, 95% CI = 2.25-5.83), where to get tested (OR = 5.15, 95% CI = 3.26-8.14), primary education (OR = 2.01, 95% CI = 1.39-2.91), being female (OR = 3.03, 95% CI = 2.53-3.62), and being married (OR = 1.81, 95% CI = 1.17-2.8) were significantly associated with HIV testing. HIV testing prevalence in Uganda has increased dramatically, more for women than men. Our results concurred with other authors that education, knowledge of HIV, and marriage (women only) are associated with testing for HIV and suggest that couples testing is more prevalent than other authors.

Putting the C back into the ABCs: a multi-year, multi-region investigation of condom use by Ugandan youths 2003-2010.

A major strategy for preventing transmission of HIV and other STIs is the consistent use of condoms during sexual intercourse. Condom use among youths is particularly important to reduce the number of new cases and the national prevalence. Condom use has been often promoted by the Uganda National AIDS Commission. Although a number of studies have established an association between condom use at one's sexual debut and future condom use, few studies have explored this association over time, and whether the results are generalizable across multiple locations. This multi time point, multi district study assesses the relationship between sexual debut and condom use and consistent use of condoms thereafter. Uganda has used Lot Quality Assurance Sampling surveys since 2003 to monitor district level HIV programs and improve access to HIV health services. This study includes 4518 sexually active youths interviewed at five time points (2003-2010) in up to 23 districts located across Uganda. Using logistic regression, we measured the association of condom use at first sexual intercourse on recent condom usage, controlling for several factors including: age, sex, education, marital status, age at first intercourse, geographical location, and survey year. The odds of condom use at last intercourse, using a condom at last intercourse with a non-regular partner, and consistently using a condom are, respectively, 9.63 (95%WaldCI = 8.03-11.56), 3.48 (95%WaldCI = 2.27-5.33), and 11.12 (95%WaldCI = 8.95-13.81) times more likely for those individuals using condoms during their sexual debut. These values did not decrease by more than 20% when controlling for potential confounders. The results suggest that HIV prevention programs should encourage condom use among youth during sexual debut. Success with this outcome may have a lasting influence on preventing HIV and other STIs later in life.

Strategies for optimizing clinic efficiency in a community-based antiretroviral treatment programme in Uganda.

We address a critical aspect of antiretroviral therapy (ART) scale-up: poor clinic organization leading to long waiting times and reduced patient retention. Using a before and after study design, time and motion studies and qualitative methods we evaluated the impact of triage and longer clinic appointment intervals (triage) on clinic efficiency in a community-based program in Uganda. We compared time waiting to see and time spent with providers for various patient categories and examined patient and provider satisfaction with the triage. Overall, median time spent at the clinic reduced from 206 to 83 min. Total median time waiting to see providers for stable-ART patients reduced from 102 to 20 min while that for patients undergoing ART preparation reduced 88-37 min. Improved patient flow, patient and provider satisfaction and reduced waiting times allowed for service delivery to more patients using the same staff following the implementation of triage.

Return to normal life after AIDS as a reason for lost to follow-up in a community-based antiretroviral treatment program.

OBJECTIVES: To understand reasons for lost-to-follow-up (LTFU) from a community-based antiretroviral therapy program in Uganda. STUDY DESIGN: Retrospective cohort of patients LTFU between May 31, 2001, to May 31, 2010, was examined. A representative sample of 579 patients traced to ascertain their outcomes. METHODS: Mixed methods were used. Using "stopped care" as the hazard and "self-transferred" as the comparator, we examined using Cox proportional multivariable model risk factors for stopping care. RESULTS: Overall, 2933 of 3954 (74.0%) patients were LTFU. Of 579 of 2933 (19%) patients sampled for tracing, 32 (5.5%) were untraceable, 66(11.4 %) were dead, and 481 (83.0%) found alive. Of those found alive, 232 (40.0%) stopped care, 249 (43.0%) self-transferred, whereas 61 (12.7%) returned to care at Reach Out Mbuya HIV/AIDS Initiative. In adjusted hazards ratios, born-again religion, originating from outside Kampala, resident in Kampala for <5 years but >1 year, having school-age children who were out of school, non-HIV disclosure, CD4 counts >250 cells per cubic millimeter and pre-antiretroviral therapy were associated with increased risk of stopping care. Qualitative interviews revealed return to a normal life as a key reason for LTFU. Of 61 patients who returned to care, their median CD4 count at LTFU was higher than on return into care (401/mm³ vs. 205/mm³, P < 0.0001). CONCLUSIONS: Many patients become LTFU during the course of years, necessitating the need for effective mechanisms to identify those in need of close monitoring. Efforts should be made to improve referrals and mechanisms to track patients who transfer to different facilities. Additionally, tracing of patients who become LTFU is required to convince them to return.

Socioeconomic support reduces nonretention in a comprehensive, community-based antiretroviral therapy program in Uganda.

OBJECTIVES: We evaluated the benefit of socioeconomic support (S-E support), comprising various financial and nonfinancial services that are available based on assessment of need, in reducing mortality and lost to follow-up (LTFU) at Reach Out Mbuya, a community-based, antiretroviral therapy program in Uganda. DESIGN: Retrospective observational cohort data from adult patients enrolled between May 31, 2001, and May 31, 2010, were examined. METHODS: Patients were categorized into none, 1, and 2 or more S-E support based on the number of different S-E support services they received. Using Cox proportional hazards regression, we modeled the association between S-E support and mortality or LTFU. Kaplan-Meier curves were fitted to examine retention functions stratified by S-E support. RESULTS: In total, 6654 patients were evaluated. After 10 years, 2700 (41%) were retained. Of the 3954 not retained, 2933 (74%) were LTFU and 1021 (26%) had died. After 1, 2, 5, and 10 years, the risks of LTFU or mortality in patients who received no S-E support were significantly higher than those who received some S-E support. In adjusted hazards ratios, patients who received no S-E support were 1.5-fold (1.39-1.64) and 6.7-fold (5.56-7.69) more likely to get LTFU compared with those who received 1 or ≥ 2 S-E support, respectively. Likewise, patients who received no S-E support were 1.5-fold (confidence interval: 1.16 to 1.89) and 4.3-fold (confidence interval: 2.94 to 6.25) more likely to die compared with those who received 1 or 2+ S-E support, respectively. CONCLUSIONS: Provision of S-E support reduced LTFU and mortality, suggesting the value of incorporating such strategies for promoting continuity of care.

Electronic medical records and same day patient tracing improves clinic efficiency and adherence to appointments in a community based HIV/AIDS care program, in Uganda.

Patients who miss clinic appointments make unscheduled visits which compromise the ability to plan for and deliver quality care. We implemented Electronic Medical Records (EMR) and same day patient tracing to minimize missed appointments in a community-based HIV clinic in Kampala. Missed, early, on-schedule appointments and waiting times were evaluated before (pre-EMR) and 6 months after implementation of EMR and patient tracing (post-EMR). Reasons for missed appointments were documented pre and post-EMR. The mean daily number of missed appointments significantly reduced from 21 pre-EMR to 8 post-EMR. The main reason for missed appointments was forgetting (37%) but reduced significantly by 30% post-EMR. Loss to follow-up (LTFU) also significantly decreased from 10.9 to 4.8% The total median waiting time to see providers significantly decreased from 291 to 94 min. Our findings suggest that EMR and same day patient tracing can significantly reduce missed appointments, and LTFU and improve clinic efficiency.