Updating vital status by tracking in the community among patients with epidemic Kaposi sarcoma who are lost to follow-up in sub-Saharan Africa

Diagnosis of KS was made during the course of routine clinical care, either by physical examination alone or with histologic confirmation. Both patients who were diagnosed at their first clinic visit and during subsequent care were included.

Among those truly LTFU, we attempted to update vital status, beginning with manual chart review, telephone calls, and finally physical tracking in the community. As noted above, manual chart review had been performed on all apparently lost patients to identify any evidence up to the time of database closure that inadvertently did not get captured in the electronic database. Yet, even if the electronic database had captured all events that had occurred, because there was a delay between database closure and time the search began for a patient believed to be LTFU, manual chart review was also deemed useful because it would detect events (return to care, death, or recorded transfers) that occurred after the time of database closure. Therefore, charts were thoroughly reviewed for their most recent entries that gave any evidence that the patient was either alive or dead. In addition, for those without recent entries, we searched for new phone numbers or geographic locator information that was not present in the electronic database. For telephone tracking, only patients who had provided consent to be called (or to have relatives/friends called) when they enrolled in clinic were contacted. This consent was requested as part of routine clinical care at the sites and not for the purposes of or in anticipation of a research study. Telephone tracking involved using all available phone numbers to call the patient. Calls were attempted at least three times a day on three different days of the week over a period of three weeks until contact was made with either the patient or an informant close to the patient.

Physical tracking was performed for those patients not found by phone, who had consented to be tracked if they had become lost, and who had sufficient geographic locator information (D3 in Fig. 1) to begin a physical search. Again, the documentation of geographic information was done during routine clinical care and did not have any special emphasis in anticipation of research. If there was sufficient locator detail to pursue physical tracking, the tracking was performed by a trained research associate (a “tracker”) for whom the minimal requirements were an intimate understanding of the local dialect, customs, geography and social relationships. Trackers were typically identified amongst existing staff whose current responsibility was, at least in part, to search for lost patients for clinical purposes, namely to bring them back into care. No explicit health care background or education was required; most trackers were some form of community health workers. Prior to commencing the tracking process, the trackers at each site underwent an in-person training conducted by one of the central investigators (A.S. or E.F.) to ensure that standard procedures were followed across sites. Training emphasized maintenance of privacy, avoidance of HIV status disclosure and attentiveness to sensitivity when interacting with HIV-infected patients or their close relatives. For example, trackers used unmarked cars or public transport during the tracking. Importantly, as opposed to the tracking that had previously been done at some of the sites where the goal was to look for as many lost patients as possible and encourage those who were lost to return, the emphasis for the present study was to look for a limited number of lost patients and spend a considerable amount of time, if needed, to find each [ 26]. Specifically, if the initial attempt was unsuccessful, trackers made at least one additional attempt and, in many instances, made two additional attempts. Tracking was overseen by a local supervisor, but all patients who were difficult to find were discussed with one of the central investigators (either A.S. or E.F.) and consensus was reached prior to deciding to stop tracking a particular patient. Trackers were charged with finding the lost patient, or failing that, a close informant who knew the patient’s vital status. If the tracker found the patient, the date of the encounter was documented. If only an informant who knew the lost patient, was identified, the tracker recorded either the date of death or the most recent date the informant knew the patient was alive. A single informant’s report of death was considered final; there was no attempt to confirm this was another informant, and there were no municipal death registries to cross reference. Searching for multiple patients simultaneously in the same geographic area was encouraged for cost saving.

We used the electronic database to obtain age, sex, date of KS diagnosis, date of ART start (if applicable), and date of last clinic visit. We subsequently derived duration since KS diagnosis (time from KS diagnosis to date last seen at clinic) and duration of LTFU (time from last visit to database closure).