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Table 1 Themes, subthemes, and quotes demonstrating attitudes towards and facilitators and barriers to DRM testing approaches

From: “I feel drug resistance testing allowed us to make an informed decision”: qualitative insights on the role of HIV drug resistance mutation testing among children and pregnant women living with HIV in western Kenya

Main theme

Subtheme

Supporting Quote

Perceptions of DRM testing

Gaps in understanding of DRM testing among patients and providers

“No, they didn’t explain to me [the drugs resistance test results or anything to do with drug resistance].“ (35-year-old, female, caregiver)

“I would wish to know more about drug-resistant testing…[m]aybe it was done but I don’t understand it.“ (Age unknown, female, adult patient)

“I don’t routinely do the interpretation of [drug resistance tests]…I am not as comfortable with the interpretation of the result…many people with the facility may not even know what it is.” (Medical superintendent)

Perceived benefits of DRM testing: informs clinical decision-making

“We got results just recently and we were told that further consultations are still being done to determine whether the child’s medications will be changed. They will give us a way forward.“ (56-year-old, female, caregiver)

“[E]specially for the first line and second line, we actually just go blindly and sometimes you never know what the ART history has been, something that is never discussed very openly; as much as you may try to gather information, but sometimes people may be hiding certain issues; so, to me I feel it was giving us an aspect of making an informed decision.“ (County-level HIV and sexually transmitted infections coordinator).

Perceived challenges of DRM testing: burdensome procedures

“For the standard-of-care it has been pathetic… it has been a challenge because there are so many channels of getting the test being done…before the test is being done, we have to get approvals, we have to discuss clients.” (Nursing officer)

“[Before the DRM test,] we need to do a direct observation test but…maybe the client is somewhere where you cannot get…[y]ou find you [cannot know] whether the client has been taking the drugs or not.” (Clinic manger)

“[T]here’s no clear roadmap of what you do next…[t]here’s a lot of mix-up and we really need to follow a lot for a DRM testing to be done. We need to do a lot of phone calls. So it’s not something that is easy for us to do.” (Clinic manager)

“Currently, even the participants who are in need and the participants who are supposed to get that test actually don’t get that test because of a lot of bureaucratic layers…those are the aspects that need to be cleared.” (National-level lab specialist)

Perceived challenges of DRM testing: lack of timeliness

“To me, I think [more timely results reception through the intervention] has really helped a lot and it has really helped us in decision-making for clients…we are really able to get those results early and act on them…the national [procedure] that takes like one month…[is] too much.” (Technical advisor)

“[W]e have been having a challenge in terms of turnaround time or getting the results early…[t]he best thing with OptStudies is that…we are able to get the results very early.” (Clinic manager)

“They really need to look at the turnaround of the DRT results because we are supposed to make decisions as early as possible. If [the tests] take a lot of time, it will then delay the process of intervention. So I would wish the process takes [a] shorted time…we should intervene as fast as possible because…the patient might be attacked by opportunistic disease and may end up dying before we even get the patients results.“ (Clinic manager)

“[Sample-to-results turn-around time] should be timely and even the giving of the results to the client should not be long…because remember they are anxious, they are human beings too, they are failing and they have gone through sessions, they’re aware that they are failing. So getting the results back is also assurance or motivating. It lays the anxiety they might be having. And then they adjust very quickly to the changes and the possible ways of getting to suppression.“ (Nursing officer)

Perceived challenges of DRM testing: facility-level challenges

“[W]e’ve also had the aspect where…they don’t track [the results] appropriately…one case that… I had to bring to their attention, then they found it in their system and it was actually just missed.” (County-level HIV and sexually transmitted infections coordinator)

“[W]e have had delays because the facilities have so much in their hands; so, they have this case, then they say they will discuss the following day; so, they postpone the discussion. Then even when it has been discussed, summarizing the case is also another one. So, I would want to say that yes, we’ve had delays, and we’ve actually had backlogs for the DRM tests.” (County-level HIV and sexually transmitted infections coordinator)

Perceived challenges of DRM testing: lack of funding

“[B]efore this I remember we had to ask for donations to do DRM testing for some participants…we were lucky that we had some well-wisher fund in the program, we call it the ‘participant fund’…for some participants, we actually had used the participant fund to facilitate…PMTCT [Prevention of mother-to-child transmission] women who needed.” (Technical advisor)

“They are not done routinely not because they are harmful but because they are expensive. So, if it is done more frequently, it means it is affordable. So, making it affordable is another issue.“ (Medical superintendent)

Provider confidence and comfort with the DRM testing process

Overall confidence and comfort with DRM testing is limited among providers

“I have not met one [sample for DRM testing in my lab]…I don’t know if it’s because of the training or maybe they have been doing it and I [do not know]…whether they…desire to have the routine VL or DRM testing. But maybe empowerment should be done to [providers] so that they capture this.” (Lab coordinator)

“[E]ither there is a knowledge gap that is making [providers] not request on this, or maybe there is fear of long turnaround time, or…maybe failure to read the guideline or that depth [of knowledge] to know that this is what I am supposed to do.” (County-level lab coordinator)

“I don’t think we’ve empowered the providers to be able to actively do that and say…this is the [DRM] result that is back and it shows mutation for these and these” (Technical advisor)

Trainings to increase confidence and comfort

“I have gone through advanced HIV clinical course, so I am confident and I also train others to interpret.“ (Technical advisor)

“[T]raining is good because we cannot know everything. Maybe the way I interpret today, tomorrow the interpretation has changed because there’s so many researchers and medical knowledge is always changing. So having a training is good…[i]f we can be trained over the same then we will appreciate.“ (Nursing officer)

We will really benefit more if we get training on it.“ (Clinic manager)

“We’ve had several trainings, but they are still a bit shy when it comes to interpretation of the mutations and the significance of those mutations when you talk about drugs sensitivity and drug resistance.” (Technical advisor)

Multidisciplinary discussions to increase confidence and comfort

“Most of the sites are doing a pretty good job [of interpreting DRM testing results] nowadays because of the NYAWEST-TWG…when they are discussing those cases, they’ve requested partners to support those health care workers to join these discussions. So people are getting better at doing it.” (Prevention of mother-to-child transmission technical advisor)

“[My experience with the OptStudies] was good because I was also being put on board, discussing about the patients, making decision with different people, sharing ideas, sharing the challenges, the right ART regimen that the patient is supposed to be put on.” (Clinic manager)

Future Improvements

Decentralize the approval process

“Yes, if we could be doing everything in our lab then it could be better because, uh we take and then do it onsite and then the client gets his result immediately… [POC DRM testing is doable] if given the equipment because it is a matter of culture, it’s a matter of culture. What we need is just put uh, logistics in place… it doesn’t even need a lot.” (Lab incharge)

“[U]sually we have a backlog of children who are not getting these tests, because we have this technical working group at the county level. So, if we decentralized this and give power to the facilities to recommend this test, maybe it would enable us to avoid the backlog.” (Technical advisor)

“[F]or the decision of the DRM testing to be done, I feel that it should be right at the implementation phase and that is the service healthcare service providers because they are the one who identifies that this client is failing this regiment, they have the history of this clients right from initiation to the way they have walked on this journey with this client.” (Clinic manager)

Facility-level improvements

“It should be made more accessible to more people, more facilities. For us, we want it even to be in the wards. To be accessible to people in the wards. So, then it makes it easier for us to make decisions in time.” (Medical superintendent)

“[T]here is a big gap because either the sample was sent, six months down the line, the results page is still blank so you are like does it mean this result was not received or… so when you follow to the clinic, you find that maybe the results was received and maybe action was taken and yet at the lab register it is still blank. So, I think there is a lot of gaps there that need to be actually, considered to be taken some action so that we can.“ (County-level lab coordinator)

“[Y]ou can get [the results] in the file, but it was filed there without their knowledge. So someone comes with a viral load results that is above 1000 and puts it in the file. Many clinicians are not good in flipping pages so they will not see it.” (Prevention of mother-to-child transmission technical advisor)

“[F]or instance Lumumba has many clinicians who those case discussions would really make a difference in their lives in terms of even improving their skills and the knowledge on how to manage some of those clients because it’s fast hand with the consultant and everyone else and you know, the NYAWEST team is also part of that…[s]o it could be in a time where we can have as many as clinicians involved as possible to be looked at as an MDT with external facilities or something like that so that it is used to discuss the case but the same time to transfer skills and knowledge to as many as are available to be used.“ (Prevention of mother-to-child transmission technical advisor)

“[W]e need to have also technical persons coming from different organizations and even the county, uh, to provide technical expert and advise on different clinical manifestation of participants and regimens switch or failures.“ (County director of public health)

Build provider knowledge

“I think having an algorithm would help because for viral load, it’s pretty clear people are able to follow. So, I think that’s an area that uh, it’s a brilliant idea.” (County-level HIV and sexually transmitted infections coordinator)

“They need to be trained. The training should be done so that even more of them…once they are not trained and many of them are not aware, they will not even request for it.” (Medical superintendent)

“[C]apacity building of the clinical teams and even the diagnostic teams, I think it is an area that I can focus on so much and see how it can be done to support the class because I know there is resistance but we are missing opportunities.” (County-level lab coordinator)

Build patient knowledge

“I would wish to know more about drug-resistant testing… [m]aybe it was done but I don’t understand it.“ (Age unknown, adult patient)

“I can’t remember well [what was taught during sessions].“ (15-years-old, female, adolescent)

“But now, the issue is the understanding is now what is uh, uh the question because really, to put it in a lay man’s language for them to be able to understand what you mean…the client will not be getting uh the right information.“ (County-level HIV and sexually transmitted infections coordinator)