During the 15 month extended programme, two patient tracers working 5 days per week were able to determine the status of 1910 (86.3%) of 2,212 patients who were identified as LTFU and eligible for patient tracing. The intervention resulted in returning 1,794 (81.1%) of 2,212 patients to care as compared to 589 of 866 (68%) patients successfully contacted and returned to care in the 6 month pilot programme (p < 0.001). Thus the effect of the intervention improved over time as more patients were successfully returned to care which may be attributed to the enhanced efficiency of the patient tracing programme as the patient tracers became more proficient at calling patients LTFU and getting them back into care; due to cultivated relationships between the patient tracers and staff from other treatment sites so that patient transfers among sites were more readily ascertained and the MRFTT started a prison programme in January 2018 so that incarcerated patients could be readily identified. In addition, “treat all’ was introduced in September 2017, before this ART was indicated for patients at MRF whose CD4 counts fell below 350 cells/mm3, so some patients defaulted from clinic as they claimed no treatment was offered to them as their CD4 cell count was “stable”. During the phone calls, the patient tracers explained to the patients the benefits of ART and assured them that once they returned to clinic, ART would be initiated/reinitiated.
The total cost of the intervention in the pilot programme was $28,107.48 USD and in the extended programme was $68,338.20 USD. During the pilot phase, a total of 589 patients were returned to care at an estimated cost of $47.72 USD per patient returned compared to 1,794 patients were returned to care in the extended programme at an estimated to be $38.09 USD per patient returned (p < 0.001). In the study by Rosen and Ketlhapile in South Africa, 20 of 97 patients (21%) LTFU were returned to care by patient tracing at a cost of $432 USD per patient, which was quite expensive and unsustainable (19). In our study, the start-up costs of the intervention was $5,757 USD for the first month and then $4,407.08 USD per month thereafter but the high yield of patients returned to care (81.1%) demonstrated its feasibility and effectiveness.
To improve the efficiency of the patient tracing intervention, it is recommended that Trinidad and Tobago (with a population of approximately 1.37 million inhabitants) invest in a National Health Management Information System (HMIS) to link and track HIV cases/patients who transfer to other treatment facilities/clinics which would result in enhanced tracking and monitoring of patients across sites. Improved reporting of deaths and linking the national death registry to a HIV case surveillance HMIS can also be effective in validating the status of patients not active in care and LTFU (19) as well as strengthening active HIV case surveillance in hospitals and in the prisons to assist in identifying patients who are hospitalized and incarcerated.
The data and outcomes of this study assisted in allocation of programme resources for targeted interventions to reduce LTFU and increase patient retention in HIV care through a tailored package of HIV services to better serve the needs patients enrolled in HIV care (20) to include, defaulters, youth, non-virally suppressed patients and the prison population. The MRFTT clinic implemented models of Differentiated Service Delivery (DSD) (21) using a client driven approach to increase patient retention in HIV care, ART adherence and viral suppression. For example, the clinic operating hours were extended during the weekdays (15) and Saturday morning sessions were launched targeting patient defaulters and those newly initiated on ART. Patient/Peer Advocates (15) were trained to mentor and assist patients to overcome the barriers to ART adherence and retention during dedicated clinic visits (15). A once –per month prison outreach program was implemented to improve ART retention among prisoners living with HIV who were incarcerated. The MRFTT also implemented a monthly youth focused clinic targeting young persons living with HIV aged 18–25 years with a package of services to include text message reminders and enhanced psychosocial care to retain youth PLHIV on ART.
As in the pilot programme, the three most common barriers to engagement in care included not remembering their appointments, difficulty getting time off from work and fear of being seen attending the HIV clinic (15). Within two days of missing their clinic visits (missed appointments), the clinic nurses would call these patients to reschedule their appointments and the MRFTT introduced a text messaging pilot programme for patients attending the Youth Clinic (reminding patients about their upcoming appointments) which is due to be extended to the entire clinic population by August 2020. Patients also reported not keeping their clinic appointment due to long waiting times at the clinic, and feelings of shame and stigmatization attending the clinic. To address these barriers, the clinic implemented differentiated services via an evening/after work clinic offering a client friendly environment (15), referrals to peer/patient advocates to address stigma and the importance of retention in care and viral suppression (15) and expedited care for patient defaulters.
One of the major challenges encountered by the patient tracers was patients who were unable to attend clinic due to financial issues. In this instance, the patient tracers would call and inform the patient of the availability of bus tickets, meal vouchers and high protein drinks once they visit clinic. In a few instances, the patients indicated that they had no funds to travel to the clinic, the patient tracers would ask the patient if they can borrow transport money from a relative or friend and assured them that this would be returned to them from petty cash once they attended clinic and that they would be referred to the social worker who would assist with financial and support services. Another challenge is that defaulters often change their phone numbers and often do not inform the clinic of these changes. The patient tracers would search the electronic patient records (EPR) to determine if a next of kin (NOK) and their contact numbers was listed in the patient’s records and if the patient disclosed their HIV status to the next of kin (which is recorded in the EPR). In this case, the NOK was then contacted as conduit to assist in reaching the patient.
If patients are not ready to return to care, they tend to be very uncooperative and would sometimes ‘block’ their phone number to avoid contact. In cases like this, the primary patient tracer would use a different phone number to call or ask the second tracer to establish contact. It is noteworthy, that after several months of unsuccessful attempts, some clients may eventually “unblock” the patient tracer’s phone number especially if they are feeling unwell or if they are desirous of returning to clinic.
Some patients reported that they defaulted from HIV care because they felt pressured by clinic staff to initiate ART when they were not ready to start. If patients were not ready to initiate medication, the patient tracers would try to help patients identify the barriers to ART initiation and assist patients though counseling to overcome these barriers. For patients who have not disclosed their HIV status to their partners for fear of intimate partner violence or that the partner may leave the relationship or having to answer awkward questions if they are seen taking medication, the patient tracers screened the patients and referred them to come in to clinic and seek assistance from a counsellor.
The ability of the patient tracers to identify and resolve the patient challenges and successfully reintegrate them into HIV care further highlights the effectiveness of this intervention. The intervention was critical in reinitiating patients on ART or initiating ART in patients who defaulted clinic and were ART naïve with the aim of achieving HIV viral suppression and reduced HIV transmission. Of the 1,794 patients returned to care, 1,686 (94%) were re-initiated/started on ART and 72.7% of these were virally suppressed (viral load < 1,000 copies/ml) as of December 2018. Given these outcomes, the Patient Tracing Programme was critical in reducing treatment interruptions which if left unattended may lead to high levels of viremia with attendant risks of increasing HIV transmission, the potential for drug resistance, the development of opportunistic infections (22), subsequent hospitalization and high costs to the health care system (23).
There were some limitations to the study as the estimate of the costs does not take into consideration other outcomes of the patient tracing programme. For example, resolving the status of patients deemed LTFU improved the accuracy of the data in the EPR (19); by ascertaining the common barriers to retention in care, the MRFTT was able to put in place a DSD model of care targeting defaulters with an enhanced package of services as a result of the intervention; some patients may have returned to care after the study concluded or some patients may have transferred to other clinics closer to their homes (thereby reducing transportation costs) on the advice of the patient tracers (19).