The median age of participants was 18.5 year (interquartile range [IQR=16 - 21.25]), 51% (n=38/74) were male, 91% (n=67/74) of participants identified as heterosexual, all were Black Africans (n=74/74, 100%), and 49% (n=36/74) had not completed 12th grade education.
Qualitative analysis of attribute identification
Table 1 illustrates the full list of all attributes and attribute-levels, which were identified in consensus among the two qualitative research analysts. Initially, eight candidate attributes with respective attribute levels were identified including (1) Frequency of administration, (2) side effects, (3) cost, (4) location of PrEP dissemination, (5) person responsible for dispensing, (6) duration of PrEP use, (7) pill intake, and (8) alternative routes of administration. Attributes and attribute-levels were identified from the transcripts and prominent participants’ quotes were directly extracted to illustrate each attribute and attribute-level (Table 1).
Table 1: List of DCE Attributes
Attribute label
|
Lay terminology
|
Key quotations from qualitative data
|
Labels of plausible levels
|
Frequency
|
Final inclusion
|
Frequency of administration
|
How often one can take PrEP
|
"I prefer taking it [PrEP] daily because as I have said we do not plan to have sex so if I take it daily even if there is a certain day which chooses to come up for me to have sex I would know that I have taken the prep medication and I would know that I have protected myself even more now because I will not take an advantage of it.”(IDI, Male, 18-24 years, Soweto)
|
Daily
|
20
|
YES
|
|
|
“I: Okay. And then you were saying that you would like to take PrEP when you are going to have sex? R: Yes. I: But then for how long now? R: For how long? I may maybe say I would take it [PrEP] 5 days before; you see? If I know that on that weekend I am going to be seen by my partner, something like that.” (IDI, Male, 13-17 years, Cape Town)
|
On demand
|
9
|
|
Side Effects
|
Negative reaction to medication
|
"Sometimes you know when we vomit you get confused, you don’t know whether are you sick or you nauseous." (IDI, Female, 18-24 years, Soweto)
|
Nausea
|
7
|
YES
|
|
|
"I occasionally had headaches." (IDI,Female,18-24 years, Cape Town)
|
Headache
|
5
|
|
|
|
"I think that if there is a problem, it will help to show that there is a problem somewhere, you might get a rash and you might think that you have an allergy." (GD, Females,18-24 years, Soweto)
|
Rash
|
3
|
|
Cost
|
How much to pay for PrEP
|
“I agree with those who said we get it [PrEP] for free, some families are struggling financially and I live with my grandmother which means that from my granny’s money I have to get money for PrEP?" (GD, Females, 18-24 years, Soweto)
|
Free
|
6
|
YES
|
|
|
“R: R50. I: Okay you would buy it [PrEP] for R50 [confirms]. R: Uhm. I: And then how long would it [PrEP] last you? R: A month.” (IDI, Female, 18-24 years, Cape Town)
|
ZAR10 – 150
(~50 penny – 7GBP)
|
22
|
|
|
|
“Maybe it [PrEP] could be, maybe 10 pills could be R250.” (IDI, Female, 13-17 years, Soweto)
|
ZAR200 – 300
(~9-14 GBP)
|
3
|
|
Location of dissemination
|
Where to get PrEP
|
“It will be easy for me to get it [PrEP] from the Clinic because I don’t have money, I don’t have money to buy it, so that’s why I am saying the clinic. [not clear] It will be easy for me to get it[PrEP] from the clinic." (GD, Males, 13-17 years, Soweto)
|
Clinic
|
25
|
YES
|
|
|
“I would like to have it [PrEP] if available at the pharmacy and be sold there, like Shoprite. At Shoprite pharmacy no one will see you when you go there and no one knows you so you will just buy it." (GD, Males and Females, 13-24 years, Cape Town)
|
Pharmacy
|
14
|
|
Person responsible for dispensing PrEP
|
Who to give out PrEP
|
“Doctors who are treating HIV because they won’t just give you the pills, they will even explain for you why you must use something like that and how you must use it [PrEP].” (IDI, Male, 13-17 years, Soweto)
|
Doctor
|
15
|
NO
|
|
|
“A nurse a female but like around our age even if it’s 30, you see but someone who understands.” (GD, Males and Females, 13-24 years, Cape Town)
|
Nurse
|
8
|
|
|
|
“I would prefer them [HIV counselors] because they are educated to counsel you first and make sure you are okay before you take something you don’t know. Nurses can explain but they don’t explain as well as a counsellor. A counsellor listens to you and you both listen to each other whereas a nurse just tells you what to do and they don’t even want to know about your concerns." (GD, Females, 18-24 years, Soweto)
|
HIV counselor
|
6
|
|
Duration of PrEP use
|
Length of time to take PrEP
|
"So knowing that you taking PrEP for the rest of your life you're safe you don’t have to worry about anything." (IDI, Female, 18-24 years, Soweto)
|
Lifetime
|
11
|
NO
|
|
|
"I would take it [PrEP] 5 days before, you see? If I know that on that weekend I am going to be seen by my partner, something like that."(IDI, Male, 13-17 years, Cape Town)
|
Five days before sex
|
1
|
|
|
|
"It should be ten years just like the loop so that we can see how well people take to it [PrEP]. Like this thing that they put in your arm.” (GD, Females, 18-24 years, Soweto)
|
Ten years
|
2
|
|
Pill intake
|
Number of desired pills to take
|
“I: So how many pills a day do you think a person should take? R: One a day. I: Ok one right why do you think so? R: No people will get bored in taking two or three pills.” (IDI, Female, 13-17 years, Cape Town)
|
One pill
|
13
|
NO
|
|
|
"R: Maybe two. I: Two. R: Yes, in the morning and at night.”(IDI, Male, 13-17 years, Soweto)
|
Two pills
|
8
|
|
Alternative routes of administration
|
Method of PrEP administration
|
"P: Implant. I: Why? P: you do not have to go to the clinic if it is free. You don’t have to go to the clinic every time to get it." (IDI, Female,18-24 years, Soweto)
|
Implant
|
6
|
NO
|
|
|
"Since I am a forgetful person, I wish PrEP can be injectable just like contraception." ( GD, Males and Females, 13-24 years, Cape Town)
|
Injection
|
20
|
|
Frequency of administration: The majority preferred a daily PrEP dosing regimen over an on-demand PrEP dosing regimen, citing unplanned sexual intercourse as one of the main reasons. Substance use was also identified as a factor that leads to unplanned sex.
“The reason is because you don’t choose when you will have sex just like Esihle mentioned that things such as Nandos, drugs and alcohol and the next thing you are kissing leading to sex.” (GD, Females, 18-24 years, Soweto)
“Because I don’t know when I’m going to have sex. I don’t plan to have sex it just happens.” (IDI, Female, 13-17 years, Cape Town)
There were however some participants who preferred to take PrEP on demand stating that they might not remember to take a pill daily and and that it would be easier to take PrEP only when they know that they were going to engage in sexual intercourse.
“I don’t see the reason why I should take it [PrEP] when I know I am not going to have sex, I am not going to be at risk.” (IDI, Male, 13-16 years, Cape Town)
“How am I going to remember to take the pill so I would rather take it [PrEP] as an on demand.” (GD, Females, 18-24 years, Soweto)
Side effects: Some participants spoke of side effects from personal experience and some from information shared by people using PrEP. Participants stated multiple side effects, including, headaches, fatigue and “sleepiness”, that could be experienced when taking PrEP. They expressed that some side effects might only be experienced for a short period, such as nausea, vomiting, stomach aches and diarrhea, especially when the body is not used to the drug.
“When you have just started maybe when you are not used to it [PrEP], maybe it can make you vomit but as you keep getting used to it, your body will get used to the idea that you are always taking tablets.” (GD, Females, 13-17 years, Soweto)
“For me, I heard that when you start something it has side effects, right? Other people said that this PrEP thing that you’re eating causes diarrhea, you see? Others become thin, others grow spots [a rash]….” (GD, Males and Females, 13-24 years, Cape Town)
Other potential side effects that participants felt could result from taking PrEP included changes of the skin, body weight, or developing a rash.
“Side effects like if you take PrEP maybe you can gain weight. Or maybe you lose weight, do you see? Or maybe [change] complexion maybe it causes pimples.” (IDI, Male, 13-17 years, Cape Town)
“You might get a rash and you might think that you have an allergy.” (GD, Females, 18-24 years, Soweto)
Cost of PrEP: The pricing of PrEP was based on GD and IDI participants’ suggestions. The actual cost of a months supply of daily generic Truvada (tenofovir-disoproxil and emtricitabine) as PrEP, as approximately R200 (~9GBP), was also taken into consideration when contextualizing the attribute-levels for the cost of PrEP. Some participants preferred PrEP to be free, while others expressed they would willing to pay. A few participants reported that they would not be able to access PrEP if there was a price attached to it due to a low socio-economic status. To buy PrEP would mean choosing between buying basic essential goods versus PrEP.
“I agree with those who said we get it [PrEP] for free, some families are struggling financially and I live with my grandmother which means that from my granny’s money I have to get money for PrEP?" (GD, Females, 18-24 years, Soweto)
“I would prefer to get it [PrEP] for free.” (IDI, Male, 13-17 years, Cape Town)
Participants suggested various prices of PrEP, ranging from R10 (50 cents) to a maximum of R300 (14GBP). The varying prices were also justified with the number of tablets that one person could afford and were also based on a monthly supply. Overall, participants stated it would be beneficial for them to be able to access PrEP to protect themselves against HIV, even when there is a cost attached to accessing PrEP.
“P: I would be willing to even if okay for us especially in the hood [neighbourhood] there it could cost maybe R20 each I would meet means and hustle hard for them so that I know I am on a safe side. I: So R20 for a bottle? P: Each pill I: R20 for one pill.” (IDI, Male, 18-24 years, Soweto)
“R: R50. I: Okay you would buy it [PrEP] for R50 [confirms]. R: Uhm. I: And then how long would it [PrEP] last you? R: A month.” (IDI, Female, 18-24 years, Cape Town)
Location of PrEP dissemination: It was important to get an understanding on where participants would like to access PrEP. Since services are free at the local clinics this is where some participants opted to access PrEP.
“It will be easy for me to get it [PrEP] from the clinic because I don’t have money…, I don’t have money to buy it [PrEP], so that’s why I am saying the clinic. It will be easy for me to get it [PrEP] from the clinic.” (GD, Males, 13-17 years, Soweto)
“I would wish to get it ]PrEP] from the clinic. Yes, a public clinic because at the clinic you are given pills, it is not known what these are for. They are handed out…when you go looking for a PrEP pill, you should receive it in a place for pills [pharmacy].” (IDI, Female, 18-24 years, Cape Town)
Other participants opted for pharmacies, as they stated it was more private and confidential compared with a local clinic. Participants also stated that accessing PrEP through a pharmacy would be faster without long queues.
“I would like to have it [PrEP] available at the pharmacy and be sold there. No one will see you when you go there {pharmacy] and no one knows you so you will just buy it [PrEP].” (GD, Males and Females, 13-24 years, Cape Town)
Person responsible for dispensing PrEP: Participants stated that doctors, nurses and HIV counsellors would be best suited to dispense PrEP, because they were regarded as experienced and trained in testing and treating HIV, as well as being knowledgeable about prescribing and explaining PrEP to young people. However, some participants preferred a young over a older health care provider to dispense PrEP.
"I would prefer them [HIV counselors] because they are educated to counsel you first and make sure you are okay before you take something you don’t know. Nurses can explain but they don’t explain as well as a counsellor. A counsellor listens to you and you both listen to each other whereas a nurse just tells you what to do and they don’t even want to know about your concerns." (GD, Females, 18-24 years, Soweto)
"A person for young people who is able to reach out to young people, someone friendly. So it may happen that she handles such department. She has to be young person so that we girls are able to talk to her and boys can have a male to talk to.” (GD, Males and Females, 13-24 years, Cape Town)
PrEP dosing: Participants discussed different dosing periods for taking PrEP. These differed from the timeframe to take PrEP to be protected for the next sexual intercourse, to the time period PrEP should be taken once started on it.
“I would prefer if they take it [PrEP] once a day but for a lifetime.” (IDI, Male, 18-24 years, Soweto)
“I may maybe say I would take it [PrEP] five days before [sex]. If I know that on that weekend I am going to be seen by my partner, something like that."(IDI, Male, 13-17 years, Cape Town)
“It [PrEP] should be ten years just like the loop so that we can see how well people take to it. Like this thing that they put in your arm.” (GD, Females, 18-24 years, Soweto)
Pill intake: Overall, participants stated that they would be willing to take one pill or two pills per dose. However, the majority preferred to only take one pill, especially when taking it over a longer period of time. If taking two pills, participants would prefer to take one in the morning and the other in the evening.
“One a day…people will get bored in taking two or three pills.” (IDI, Female, 13-17 years, Cape Towm)
“It is easy to take one pill because if you take more than 1 pill the more you get discouraged to take it because you will be like so many pills why? Why do I have to take pills 3 times a day." (IDI, Female, 18-24 years, Soweto)
Alternative route of administration: During the GDs and IDIs, alternative routes of administration were discussed. Participants reported they would chose an implant or injectable as it would only need to be administered once and would not require returning to the clinic as frequently compared to using oral PrEP.
"Since I am a forgetful person, I wish PrEP can be injectable just like contraception." (GD, Males and Females, 13-24 years, Cape Town)
“Implant because injection people are scared of pain whenever we talking about injection comes pain in our heads but implant it is something which you do once off maybe then it last for a certain period which is intended for it to last.” (IDI, Male, 18-24 years, Soweto)
Expert opinion
The study team consulted two experts experienced in designing and implementing DCEs in South Africa. Through an iterative process of discussions with these experts four of the initial eight candidate attributes were retained with three attribute-levels, each, except for the dosing regimen attribute, which consisted of two attribute-levels, daily and on-demand PrEP. Table 1 indicates whether the attribute identified during the qualitative analysis process was retained after the discussion phase with the experts (last column). The discussion was aimed at selecting the most relevant attributes with a maximum of three attribute-levels each. This was also important to ensure the DCE incorporates a manageable amount of attributes and level options to ensure that participants were not overwhelmed with the number of choice sets within the DCE. Consultation with other local team members ensured the language used for the attributes and attribute-levels was understandable and relevant within the South African context. For the location of PrEP dissemination it was deemed relevant to include a third attribute level, mobile clinic, as this has been a feasible approach to provide integrated health care, counselling services and dispensing of medication in underserved communities in Cape Town [32]. The final attributes and attribute-levels for the DCE included: dosing (daily and on-demand PrEP), location (private pharmacy, public clinic, mobile clinic), cost (free-of-charge, ZAR50 (~2GBP), ZAR200 (~9GBP)), and (4) side effects (nausea, headache, rash). After the iterative revision process, SAS was used to develop a statistically efficient and balances fractional factorial design of the DCE. Using SAS Enterprise Guide 7.15 (SAS Institute Inc., Cary, NC, USA) and the attributes identified in the qualitative study, the maximum possible number of attribute combinations was 23 × 31 [33]. A smaller factorial design was further developed using the D-Efficiency criteria reducing the choice sets to a feasible number of 6. The final DCE was constructed with a total of six binary choice sets with two scenario descriptions and graphics of the attribute-levels and participants can chose between Choice A and Choice B (Figure 1).
Pilot testing of the DCE with Community Advisory Board Members
To ensure a community engaged approach to the DCE development, the ACAB of the PHRU ratified the DCE choice sets as developmentally and contextually appropriate [20]. ACAB members regarded the number of choice sets as manageable, easy to understand, user-friendly and easy to follow. In addition, ACAB members agreed the illustrating graphics included in the DCE choice sets were complementary, relevant and context-specific for the attributes and related levels.