Retention outcomes and drivers of loss among HIV-exposed and infected infants in Uganda: a retrospective cohort study

All DNA PCR tests of HEI in Uganda were captured in a national electronic database housed at the MOH EID office. After a sample was tested by DNA PCR at the regional reference lab, a copy of the result was sent to the MOH EID office and captured in a Microsoft Excel database. At the outset of this study, a list of HEI who received a DBS test at the 3 hospitals during the review period was extracted into a separate Excel database for this study. The extract from the national EID database provided the date of DBS test, age at DBS test, and HIV test result for each HEI in the cohort.

The retention data for each HEI was then manually collected at each hospital from 10+ data sources spread across several different clinics. Data was collected on every follow-up visit made by each HEI in the cohort and all other variables of interest (Table 2) and inputted into the study database. In addition to the HEI cohort review, we collected data at 1 hospital on the number of HIV+ pregnant women whose infants were tested after birth, which provided a measure of HEI testing coverage.

The data was analyzed using Excel and SPSS software. 95% confidence intervals were calculated for mean values of age at testing, enrollment into care, and ART initiation. Statistical significance of retention changes before and after the transport refund intervention was assessed using a z-test for comparison of proportions in two independent samples (α = .05).

The qualitative assessment of EID implementation was designed to identify the factors contributing to HEI loss-to-follow-up. Study investigators conducted semi-structured interviews with 37 HWs across the 7 facilities to elicit information on practices and systems in EID program implementation, as well as capture their experiences and perspectives as direct implementers. Investigators conducted structured non-participant observation of EID implementation systems at the different clinics involved in EID within each facility (e.g. entry point clinics, lab, HIV clinic). Whereas the observations provided direct examination of EID practices and systems (e.g. flow mapping), the interviews provided information and context through the lens of the HW.

The interviews and observations captured how, when, where and by whom EID services were provided at the health facility; the flow of caregivers, samples, test results, and data; the data management and referral tools in use; and the package of care and counseling services provided to HEI. Topical guides were used for the interviews and observations, and the data was recorded in field note format. For each method, the raw qualitative data was typed into Microsoft Word, collated by topic and question, indexed, and analyzed to identify common themes. The analyses from direct observation data and interview data were triangulated [19]; we first generated broader categories of factors affecting testing and retention of HEI, then identified specific factors within each category, and finally broke down the factors by which part(s) of the EID continuum they affected.

The interviews also assessed HW knowledge and awareness of EID and pediatric ART (how to screen for HIV exposure, signs of pediatric HIV infection, testing and feeding algorithms, infant ART initiation criteria), as well as the counseling messages conveyed to caregivers. To obtain a basic measure of HW knowledge, we calculated how many of the interviewed HWs provided accurate information about each topical area.

We used both interviews and observations to assess whether and how consistently clinical care and counseling were provided to HEI. Given the lack of clinical care and counseling data for individual HEI visits, our assessment focused more broadly on whether each key component of HEI clinical care and counseling package was provided as 1) routine practice at every visit, with few exceptions, 2) provided occasionally or only when triggered for a specific reason, or 3) not provided at all, except in rare situations. To assess the messaging provided by HWs to caregivers during counseling (as a proxy measure for counseling ‘quality’), we compared the information conveyed by HWs with the counseling messages prescribed in the national EID training manual [20].

This study tracked retention outcomes of 1268 HEI who received a DNA PCR test at 3 regional referral hospitals in Uganda between September 2007 and February 2009. 244 out of 1268 HIV-exposed infants tested HIV-positive (19.2%).

Synthesis, analysis and triangulation of qualitative data from the HW interviews and direct clinic observations yielded 6 categories of factors contributing to HEI loss, as well as the specific factors within each category and which part(s) of the EID continuum they affected (Table 4). The 6 categories included EID clinic systems and patient flow; referral and data management systems; clinical care and visit schedule; counseling materials, messages and techniques; knowledge and awareness of health workers, and DBS sample-result turnaround time.

Uganda’s national program has succeeded in rapidly scaling up testing of HEI and has started to make inroads in improving retention of HEI after testing. In addition to intensifying retention efforts, the program’s focus should now expand to include linkage of HEI from entry points to DBS testing, and linkage of HIV+ infants to chronic care after receiving results Fig. 8. The study findings also underscore the need to improve EID’s integration with PMTCT and pediatric ART services at national and district levels.

Findings from analysis of the transport refund pilot can help inform national program strategy. While more HEI caregivers received test results at 2 of the 3 hospitals among those who received the transport reimbursements, the overall improvement was modest and retention was still under 70% in the best case. This suggests that transport costs for caregivers, while one contributing factor, were not the only or biggest driver of HEI caregivers failing to receive results. Further, the high cost of implementing the program suggests challenges with sustainability and scalability of this type of intervention, even if the retention gains had been greater. Ultimately, addressing the underlying barriers to HEI retention by improving health facility systems for how EID is implemented may provide a more feasible, cost-effective, and long-term solution.

Efforts to improve retention of tested HEI in Uganda have emphasized reduction of sample-result TAT. Indeed, the national EID program has undertaken several initiatives to reduce TAT, including creation of a new sample-result transport system and consolidation of the regional reference laboratories into a single, more efficient centralized national laboratory [22‐24]. Our study found that sample-result TAT was too long and contributed to loss to follow-up, but even when TAT was less than 30 days, far too few caregivers received results (< 60%). Also, lower TAT wouldn’t have a difference for the many lost HEI who never returned after the test. The key takeaway is that improving sample-result TAT needs to be one key component of a multi-faceted retention strategy, rather than the primary focus.

On a fundamental level, the EID program at facility-level needs to shift from a lab-based service to a clinic-based chronic care service. Based on this study’s findings, we have developed a new model for EID implementation at health facilities, depicted in Fig. 9. In this model, HEI receive the full complement of EID services—clinical care, counseling, registration and follow-up— at one centralized and well-equipped “EID care point” in the health facility. This “EID care point” sits within an existing clinic— ideally in the HIV/ART Clinic— and contains sufficient space, basic medical equipment, at least one dedicated clinical staff, data tools, and job aides to enable high-quality care, tracking, follow-up, and linkage of HEI. In contrast to the fragmented systems previously in place, all HEI are initially referred to the “EID care point” for registration and counseling, and return there for PCR results and all follow-up care visits. DBS tests can be done at the entry point clinics, “EID care point”, or facility lab, but all patients, samples and results run through the “EID care point”. The facility lab is a conduit for samples and results rather than the primary EID service delivery point. Each health facility adopts an EID clinic flow that works best for its context, but fulfills the minimum requirements of the “EID care point” model. The logic of the “care point” model lies in the premise that it is more effective to concentrate limited staffing and material resources for chronic care, counseling, tracking, and follow-up of HEI in one place, rather than scattering the focus and resources across many points in the facility.

To comprehensively address the gaps at each point in the EID continuum of care, the “EID care point” model is coupled with many other elements: instituting a routine monthly visit schedule for all HEI; establishing clear HEI clinical management protocols and providing clinical charts; setting up a triplicate referral system; providing medical equipment (e.g. height boards), longitudinal data registers, appointment books, counseling brochures and reference materials, job aides on HEI care, testing, and feeding, and financial support for follow-up of lost HEI. This set of initiatives is implemented through training and frequent on-site mentorship of health workers.