Characteristics of the sample
The sample of 28 PLHIV was purposively selected to have equal gender representation. The average age of participants was 38.4 (range 20–62 years). Many participants (11/28) had not finished secondary school and a similar number (10/28) were unemployed at the time of the interview. Among those employed, all were blue-collar workers (e.g. domestic worker, driver, construction worker, etc.). On average patients had been living with HIV for 4.6 years, and almost all (26/28) were on ART. Eleven had a history of TB, with 10 diagnosed with TB and HIV at the same time.
Almost all clinical care providers interviewed were women (25/28) and were working as TB focal (12) or professional nurses (11), in addition to 3 counselors, 1 operational manager and 1 community health worker. The majority of these care providers had experience working with TB screening, diagnosis and treatment as part of their duties, although the length, depth and exact nature of this experience varied. The average length of time providers had worked at the clinic was 8.0 years (range 2–25 years).
Going to clinic as “all-day event”: The clinical care context for TB and HIV
Overall, patients rated the quality of care they received at participating clinics highly. However, all patients interviewed discussed long wait times at the clinics as a major challenge, frustration, and a clear barrier to staying engaged in care and adhering to ART. Most participants stated they arrived at the clinic at around 6 AM, only to be seen often several hours later, and then not leaving until several hours thereafter, well into the afternoon. The general consensus was that going to the clinic, was often an “all day event”, which was perceived as an almost impossible barrier for those who worked outside their home, as well as a significant inconvenience in terms of child care and other domestic responsibilities for those who worked inside their homes. Participants also discussed challenges with distance and transportation to the clinic.
Several participants commented on the overcrowding in the clinic environment, where it felt like there were “thousands of people” waiting and a lack of space for different types of clinical activities (e.g. TB screening). Several participants reported having to return to the clinic multiple times over a short period to collect results, or come back for additional appointments, making adhering to the prescribed care routine even more challenging. There was an overwhelming consensus on the part of patients that these clinics needed extended days and hours and more staff to accommodate their heavy patient caseloads. As one patient relayed:
“Now we do, some of the people they sleep here outside the gates. So it will be very good and very nice if they can open this clinic for 24 hours. I don’t know how can you do it, as the people of health department, but it would be very good for the life of our nation so that we can live longer. Sometimes you’d find that you have to queue from 4 o’clock in the morning, you go out here 4 o’clock afternoon. You find that twelve hours you’re in the clinic. So it’s like uselessness and what, but it’s about your life. You must stay. So sometimes it’s punishing our mind, we’re hungry, we are thirsty. There’s only this place, the clinic. There’s no shop around. You must travel long so that you can’t find the people behind you being upfront of you. So the queue, that’s the problem about the queue.”
Among providers, there was some acknowledgement of the concerns described by patients. Their overall perception, however, was that their clinics were working relatively “smoothly” given their high patient loads and that most of the clinic staff that they worked with were dedicated and diligent in their jobs. A few providers did discuss attitudinal issues among providers including negative and stigmatizing views regarding both HIV and TB, as well as a lack of motivation to implement guidelines. They also discussed operational problems at the clinic level including stock outs of TB and HIV medicines and supplies, lack of clinic personnel, and other material resources (e.g. vehicles and tracer teams) to track and retain patients in care.
Systematically screening for TB in an overburdened clinic environment
Most patients appeared to understand the common symptoms of TB and mentioned signs such as persistent coughing, night sweats, and weight loss. However, many patients reported they were not always specifically asked about TB symptoms at each visit, which was generally every month to pick up their TB and/or HIV medicines.
Providers, on the other hand, were in consensus that it is policy to screen all patients for symptoms of TB at every visit. They did report that due to patient caseload and lack of personnel, screening at every visit did not always happen. Several providers reported that their clinic had just adopted new procedures to improve the efficiency and frequency with which they screen for TB including: recording whether a given patient was screened for TB at that visit by using a standardized national screening tool and placing a copy in the patient’s medical chart, as well as integrating screening into the patients’ care at the clinic, when they were having their vital signs checked, or during the consultation.
Providers indicated that patients with one or more TB symptoms were provided a sputum bottle and asked to produce sputum on the spot and referred to the TB focal nurse. They reported that sputum samples were sent out for processing at the local hospital laboratory using the Xpert® MTB/RIF test. Most providers indicated they received results in 24–48 h. An important challenge described by providers was getting patients to return for results and to start treatment if needed. In turn, most clinics reported having tracer teams in place to be able to find the patients with active TB to come back to the clinic to start treatment.
Based on patient reports, being given a sputum test or asked to “spit into a cup” appeared to be much more common than having received a TST. A few patients mentioned being given a sputum cup to take home, because they were unable to produce sputum at their visit, which they suggested further delayed the TB diagnosis process. Many patients found the sputum process “difficult”. Some clinical providers reported that some patients found it “dirty” and uncomfortable. Others felt that some patients may be worried about perceived stigma related to both TB and HIV if they were asked to provide sputum, as TB is often found among those living with HIV.
Overall, there was a sense that the clinics viewed TB as a priority and that providers were making concerted efforts to improve the screening process. Yet, heavy patient loads and a lack of personnel, continued to inhibit fully operationalizing these efforts.
Lack of clarity regarding guidelines for TB management among PLHIV
The interviews conducted occurred approximately 6 months after the official release of the South African guidelines on TB management for PLHIV in December 2014, which recommended the use of TST prior to starting IPT. Many providers, however, mentioned that their clinic had not yet received a hard copy of the new guidelines. At the time of the interviews, about half of the providers interviewed reported that their clinic had started implementing TST in adults, whereas others said they were only using it for children under five with a household TB contact. There were some that were simply unclear about what they should be doing. Many discussed having just received guidance that they were supposed to be using TST now, but they were not sure exactly how to operationalize this new procedure. Those that did have experience with TST often had concerns about the ability of the clinic to effectively implement this screening tool. For example, many reported that approximately one third of patients do not return to the clinic in 72 h to read the TST, causing them to have to set the test again and start the process over, however several nurses stated they were not clear on what to do if the patient did not return within 72 h. Regarding the new guidelines, one nurse summarized her clinic’s experience this way:
It’s a challenge, I don’t want to lie. It’s a big challenge. With recently they told we must do the TST. Yes. And then maybe the challenge …, now we don’t have a challenge as such, because at least they are supplying with the, that Mantoux, the test itself. So you’ll talk to the patient, and then you’ll do the skin test. Most of the time, those we start, just starting, then we newly diagnosed, and then you do every assessment, and then you do the skin test. If the patient agrees, then you do the skin test. And then you ask them to come maybe on Friday. And do it on Thursday, on Tuesday, and ask the patient to come on Friday. And the patient doesn’t pitch up. She comes again in Friday, the other Friday, after two weeks. ..And then that makes the number of the INH, and IPT go down. It’s not like before, when we used to at least with the TB screening, we used to start with IPT. Now it’s not. And then the other challenge maybe there’s, we are not maybe trained, the Sisters are not well trained…that can be another challenge, because maybe they will wait for another one [that is trained]. That Sister is not here, so there’s nobody to do the TST.
In response to challenges to implementing TST, some providers reported their clinics started adopting innovative practices. For example, in one clinic the management ensured that all nurses were trained on how to place and interpret TST and the clinic rotates a nurse responsible for TST and initiating IPT daily. By having all nurses trained about the TST and IPT it allowed for patients to return to have the TST read at any time and it is not dependent on a particular nurse being on duty. In other clinics, patients coming back to have the TST read were not required to have to wait in line in order to minimize loss to follow up.
Streamlining screening: Using routine CD4 blood draws to screen for latent TB
Within this context of an often overburdened clinical care environment and a lack of clarity regarding how to interpret and operationalize current TB preventive treatment management guidelines for PLHIV, almost every provider and patient interviewed reported being open to the idea of screening for latent TB at the time of the blood draws for CD4 count. Providers in particular felt this would streamline the latent TB screening process, given that due to heavy patient loads and a lack of personnel, people were simply being missed for screening in a given visit. Providers also discussed the significant challenges they faced in ensuring that their patients returned to have the TST read. There was a consensus that using the blood draws would help overcome many logistical and follow-up problems, indicating its ease compared with TST:
That would be awesome. Really [laughter], because you take blood, you send it away, and you get your results. It’s not like “come, let’s do this test.” And sometimes it’s itching and irritating for the patients, TST. If it’s just a blood test, send it away, look at the results, start…That would be wonderful. Really, I think it’s amazing if we can do it like that.
It might be more accurate, because some of the staff, we’re all trained, but sometimes we’re not sure if they measure it correctly, or if the TST was done correctly, did they take enough, was it inserted sub-dermally? There can come human errors as well. With blood, I think the result is the result. You can see it in the blood. And we do draw the bloods of the patient anyway. We have to do the CD4 count, we have to look at the kidney functions, liver functions, viral loads. If we can do the tuberculosis test with that, it would be great.
Other providers relayed similar sentiments and enthusiasm, due to the challenges they saw associated with gathering sputum samples. However, this enthusiasm also relayed a misunderstanding on the part of some providers about the differences between the purpose of TST and QGIT, in screening for latent TB, versus the use of sputum and chest X-rays which should be used to establish active TB.
I will welcome it open handedly you know, because we have quite a few patients if you ask for sputum you send them home with the bottle, they will come back only after two maybe a week or so…and then with some of them, especially if you believe that there might be something you actually send them for chest x-ray. Which I think is more money for the department. So blood will be easier.
I like black and white. So if it is done with a blood test, blood has never lied to anybody. If it is done with a blood test, I’m sure it is going to be much easier. Because lots of people you find that they have difficulty with sputum and then the bottles leak or then they put in only spit and not really phlegm and then the bottles got opened along the way. So I, a blood test for me would work much better.
Patients indicated that while some people are not fond of blood draws, that since the CD4 count blood draw was happening anyway it would be well received. Also, from the patient perspective this would allow for both ensuring that they were screened for TB, as well as potentially avoiding the challenges of taking and returning for the TST, that many patients found time consuming. While there was general consensus on this issue, one patient did relay a concern about timing, as many patients may only have a CD4 blood draw 1–2 times a year. So while this patient thought screening the CD4 blood draw for TB was a good idea, he wouldn’t want that to delay finding out he had TB, as he would want to know that information as soon as possible. This issue was also raised by clinical providers, and a few in turn mentioned that screening the blood for TB could potentially complement, as opposed to replace, the other TB screening methods given that CD4 blood draws occurs generally every 6–12 months. These concerns further exemplify difficulties by both patients and some clinical staff to understand that QGIT is meant to test for latent TB infection rather than active TB disease. Screening for TB symptoms would continue at each patient visit, while the use of QGIT to screen CD4 blood draws could potentially replace use of the TST.
