Survey finding gaps in care, records during transfer of patients from PEPFAR-supported program to community-based clinics comes as new report cites need for data
The patients who went to the Sinikithemba HIV clinic at McCord Hospital in Durban for antiretroviral treatment knew the value of the care they received; they paid for it. In turn, for an inclusive monthly fee of about $18 a month, the largely Zulu-speaking urban-based patient population got comprehensive care from both doctors and nurses who could deal with complicated cases and monitor progress with electronic record keeping. The place was considered, an article in Open Forum Infectious Diseases notes, a place that provided a model of care, “a Center of Excellence.”
But, as the U.S. President’s Emergency Plan For AIDS Relief began its five-year plan to roughly halve its contribution in South Africa for the world’s largest antiretroviral treatment program, the hospital, with no alternative funding, had to move fast to transfer nearly 4,000 patients to community based clinics between March and June of 2012.
Too fast, reports, commentaries and remarks from people close and connected to the process, have indicated since, including an on-the-ground report and commentary from Health Global Access Project, and including former U.S. Global AIDS Coordinator Eric Goosby’s assessment of a need to carry out future transitions “significantly slower,” Now, the Open Forum article, The Linkage Outcomes of a Large-scale, Rapid Transfer of HIV-infected Patients From Hospital-based to Community-based Clinics in South Africa, puts numbers on the results of the move. While it cites the success of an estimated 82 percent of patients found to have remained in care, and the uncertainty of what happened to the remaining 18 percent, it also highlights information, that along with patients, went missing in the process. The information includes input not sought from patients, and information not included in patient records to the clinics to which they were transferred.
Researchers, who surveyed transferred patients and then validated their reports by auditing records at randomly sampled clinics, sought to determine where patients ended up within 90 days of transfer — after which it could be assumed their treatment (in three-month supplies) was interrupted. Along the way, they discovered that patients whose assigned transfer clinics were far from the hospital were less likely to be found. But they also found that of patients assigned to clinics close to their homes who then went to other clinics instead, a universal reason was “inconvenient location,” suggesting they avoided clinics at which they might be recognized by neighbors. In turn, the researchers, say, the data suggests patient preferences should be included in transfer decisions. In addition, researchers found as they tried to track patients, not all of the transfer clinics recorded that patients had transferred from the hospital, although it was vital information to monitor the success of a major phase of the PEPFAR transition.
While the article notes the “relative success” of the 82 percent whose continuation in care was determined, Matthew Kavanagh of Health GAP, who wrote The Politics of Transition and the Economics of HIV and an accompanying commentary for the Journal of Acquired Immune Deficiency Syndromes on the South Africa funding cut impact, the hospital, the care it had offered and the paying population it served, provided optimal conditions for an ambitious transfer.
“That was already a best case scenario,” Kavanagh noted. At the same time, he said, about 80 percent of direct HIV services that have been supported by PEPFAR are in public settings, where the impact of disruption will be greater. The loss of direct PEPFAR support in those settings has led to the loss of doctors, nurses, laboratory capacities and data keepers, he said, adding, “as far as I can tell PEPFAR hasn’t actually gone back to capture the impact of that.”
The OFID article and its findings coincide with the release of Data Watch: Closing a Persistent Gap in the AIDS Response, a report from AVAC and amfAR, the Foundation for AIDS Research highlighting the need for improved data collection and use for effective and efficient HIV efforts. Citing “a persistent gap in the AIDS response,” the report notes failures to track the success of interventions, including in retention in care and viral load suppression, as well as continued missing numbers surrounding populations with the highest risks for HIV and the lowest access to services, including men who have sex with men, incarcerated people, transgender women, people involved in sex work, and people who inject drugs. Evidence-based consensus has evolved on what needs to be done to end AIDS, the report notes, making data that accounts for efforts and results essential.