From: Patients’ preferences for antiretroviral therapy service provision: a systematic review
Initial concepts | Emergent themes | Supporting quotes and contributing studies | Final themes | Dimension of final themes |
---|---|---|---|---|
Receiving ART information from TV and Radio | Media source | “I got the information on ART from the TV and radio. They said there is a drug that can help AIDS patients to live longer.” [39] “At the hospital: I heard about it from the hospital… After testing when I was positive, the nurse informed me of the availability of ART.” [39] “I heard of the ART drug from the hospital when my husband brought me, and I was tested positive. The doctor said there is a drug that will make us stronger all the time.” [39] | Source of information on ART | Structure |
Hearing about ART information from the hospital | Health care providers at the hospital | |||
Being told by a Nurse about the availability of ART | ||||
Being informed by the doctor about the availability of a drug | ||||
Hospital education and preparation | Health facility service features | ‘‘For ART drugs, we prefer the hospitals because these drugs are not just any drugs to be administered at home, because there is a lot of education and preparation before these drugs are given.’’ [39] ‘‘We prefer facility-based because it will be a big problem if it is home-based. Anytime I come here, people see me coming to the hospital for a different purpose other than coming for the ART drug, and it is better that way. But if it is home-based, it will make us think about it, and that alone can kill us early.’’ [39] ‘‘I prefer facility-based like the ***** hospital because when we all come to meet at the center to take our drug, we share our problems together and laugh and make ourselves happy which help take some of our sorrows away.’’ [39] ‘‘I prefer the facility-based service to home-based because there are some people who have the disease but don’t want their relations to know because of stigmatization. Home-based treatment will increase stigmatization.’’ [39] ‘‘...Everyone goes to the clinic, so no one will know why you are coming here [to the clinic], you may say you have a headache…Home delivery is a no....’’ [37] ‘‘... I don’t like them [medications] to be brought home because my neighbors may know, and I may lose hope. I will lose hope forever.’’ [37] ‘‘...getting treated at the clinic is important...because there are times when you will be at the clinic, you can discuss until you are satisfied... than at home or at shops where you can just go and pick your pills there is no time for discussions.’’ [37] | Preferred place for ART services | Structure |
Meet and interact with colleagues | ||||
An opportunity for discussion with providers | ||||
Access to psychosocial support | ||||
Avoids stigma and discrimination | ||||
Open location of some ART clinics deter ART access | ||||
Drugs can’t be delivered at home | Home-based service features | |||
Home-based treatment will increase stigmatization | ||||
Home-based service may demand training more ART provider | ||||
Health workers know how drug improves patient context | Health worker | ‘‘I will prefer health workers who have been rendering the service because they know how the drug has been improving our situation.’’ [39] ‘‘We want the doctors and nurses because they have been trained, so they know all about the drugs and the disease.’’ [39] ‘‘PLHIVs should be trained to help in giving out the drugs. If this is done, it will encourage us to feel free to go for the drugs because if a PLHIV gets there and sees the colleague HIV patient giving the drug, they will not feel shy again.’’ [39] ‘‘I think it is best if ‘foreigners’ come because the indigenes would let others know about your status. As of now, those who give the drug to us are not from this community, and they relate to us very well. I like the way they relate to us, so if they continue, it will be better.’’ [39] | Preferred person to deliver ART services | Structure |
Doctors and nurses know about drugs and disease due to their training and experience | ||||
PLHIVs should be trained to help in giving out the drugs | Trained PLHIV | |||
Trained PLHIV encourages the patient to feel free to go for drugs | ||||
Trained PLHIV avoids patients' feeling shy | ||||
Choosing foreigners since indigenes might break confidentiality | Foreigners | |||
Foreigners relate with patients well | ||||
Nice and respectful | Provider’s attitude | ‘‘The health workers behave towards us very well. They handle us like we are siblings. In the beginning, before they put you on these drugs, they ask you to bring a family member along. It is not difficult to get such a person. It should be someone whom you believe will not go and spread the information that you are infected. When they put you on the drugs, you wouldn’t have to come with anybody to the hospital again.’’ [39] ‘‘They are generally good. She will ask which part of your system is disturbing you. They don’t meet us with frown faces; we converse with them nicely.’’ [39] ‘‘We expect that when we come here for a service that we are treated like normal people in the same way that someone with flu or a headache is treated and not to be labeled as ‘the ones who have come for medication’....’’ [37] | Provider’s attitude | Process |
Provider request a family member of own choice before putting on ART | ||||
The provider doesn't request a family member when putting on ART | ||||
Nice and sympathetic | ||||
Respect and confidentiality | ||||
Unable to afford the cost of transport | Transportation cost | ‘‘The distances are far. Due to this, there are some people who hardly come for the drugs on a regular basis because they cannot afford the cost of transport involved.’’ [39] ‘‘My problem is transportation. Where I stay is far from where I take the drugs. It cost me about GHC5 anytime I come for my drugs. Under such circumstances, if you don’t have somebody to support you financially, it will be difficult for you to collect your drugs regularly as required.’’ [39] ‘‘The drugs should be given to us free of charge. Sometimes, for one year, I will not have money, but they give the drugs to me.’’[39] “My major concern is that I will not be able to get access, or to get it for free more, because of the change of the government.” [42] “Some people, I mean, you have, it’s affordable. Then you have to come to where the insurance will pay so much, and then you have co-payment. And that’s still expensive for some people.” [42] “If I need to go back to Mexico, how will I get it?” [42] ‘‘If I had to pay for the medicine myself, I’d probably be dead. [.] Because I couldn’t afford it.’’ [49] | Cost of ART medications | Structure |
Transportation cost | ||||
Out-of-pocket cost | Drug cost | |||
High insurance co-payment | ||||
The patient recommends a free drug cost | ||||
Patient willing to pay whatever amount required as a drug is available | ||||
Long waiting time | Waiting time | “At times, you spend a lot of time over there, from 8:00 am to 3:00 pm, due to huge numbers coupled with a small number of health workers.’’ [37, 39] | Time spent at clinics in ART pick up | Structure |
Shorter waiting time | ||||
Flexible clinic hours | Times of operation | “It depends on your schedule for collecting the ART drugs; yesterday, for instance, by 1:30 pm, everybody had been served, and the center had closed. There are some days when the pressure is quite high, particularly on Fridays but on Wednesdays, there are few people.’’ [39] | Times (hours and days) of operation | Structure |
Day of schedule | ||||
Less frequent visit/appointment | Visit frequency | Not applicable [37] | Visit frequency | Structure |
Once or twice a year visit with larger supplies of ART dispensed at each visit | ||||
People want to be seen individually | Individual model preference | “I think people want privacy in general. No one wants their health status to be known, so people want to be seen individually, and I think there is no one who put a sticker there.’’ [37] “People are a problem, I want to come alone, but I do not mind coming with a family member so that they know where I get my medication just in case I get sick.’’ [37] | Individual model preference | Process |
The patient wants to come alone but do not mind coming with a family member | ||||
Good relationship and open communication | Good relationship and open communication | ‘‘I am not my diagnosis. I am somebody. [.] So I think he is starting to understand that, that I need more than ‘‘your levels are fine.’’ He literally turns the screen and scrolls down and shows me the levels and recent tests and what he wants and what he thinks how we should move forward.’’ [49] ‘‘You know, I would talk to my doctor, what’s his experience with the medication and what he knows about the medication [.]. I would pump my doctor for information, what he knows [.], how an adverse reaction relates to the majority of people on this medication as opposed to [a] small group.’’ [49] ‘‘And fortunately that I have excellent communication with my doctor because if I have an issue with home or something comes up, I can email him, and I will hear back from him immediately. So that helps a lot to have good communication.’’ [49] ‘‘Ultimately, it is that patient’s decision, but I take the advice of what my doctor offers.’’ [49] ‘‘Like I said, I did it because the doctor prescribed them for me. [.] And I figured she would know what was best for me. She’s the doctor, and I’m not. [.] So whatever she prescribed, I took. [.] Just as simple as that, you know.’’ [49] | Patient involvement, relationships with providers, and shared decision making | Process |
Patient as a final decision maker | Shared decision making | |||
The patient decides based on the doctor's recommendation | ||||
Paternalism | ||||
Single tablet daily | Concerns of pill burden | ‘‘One a day. That’s a lovely thing to have to do.’ ’[49] ‘‘One of the main things I would require is for that medicine to also be like one tablet a day, but the amount of that new med is not as important as what it brings, you know, what it has to offer.’’[49] [Interviewer:] ‘‘Let’s assume [.] you would go to a regimen which means twenty-seven tablets, but there would be not such a high risk for having liver problems, and your renal system would be great, would you do it?’’ [Subject:] ‘‘I would try it, yes.’’ [49] [Interviewer:] ‘‘So there’s a drug which would cause dizziness, but you could go down to one tablet in the morning, and there’s a drug which doesn’t cause dizziness, but you would have to take two tablets two times daily.’’ [Subject:] ‘‘Two tablets two times a day. I probably would go with the two tablets twice a day.’’ [49] | Pill burden and pill size | Structure |
The problem of swallowing big pills | ||||
Willingness to accept higher pill burden in exchange for reduced side or long-term effect | ||||
The patient prefers drugs in the form of a liquid, capsule, or injection to either avoid swallowing pills or to lower the intake frequency with an injection once a week or month | Drug administration choice | “The other thing is I would like for or want this medicine to be in a convenient 3, 6, or 12-months injections.” [42] “One 37-year-old female participant raised the possibility of monthly ART injections, stating this would allow them to receive their medication at the clinic and eliminate the risk of unwanted disclosures in their daily lives”[35] ‘‘Some pills have an after taste once you swallow it, and it can be a severe case to the point where you just do not want to take it.’’[49] | Drug administration | Structure |
Feeling burdened due to daily drug taking | ||||
Unpleasant drug taste | ||||
Privacy of drugs | Perceived challenges with ART packaging and self-repackaging | “It is easy for people to recognize the ARTs when they are in their boxes. Even a child can recognize them.” [35] “if the medicines are in the bottle, it’s a normal thing to produce some kind of noise, and this is not for ARTs only; it’s for all other types of medicines.” [35] “Some of us stigmatize ourselves, thinking that if people see us carrying the medicines in the box, they will know that we have HIV.” [35] “If people see [the pills], they will not respect the person who takes the medicines because they will know your status.” [35] “Maybe they are afraid to be stigmatized. You know people live in different circumstances, so it depends on the community that the person lives in and how they perceive the problem.” [35] “There are some patients who don’t like to be seen by others; they hide even while at the clinic. They hide because they are afraid to be seen by the people they know, especially if it’s their first time.” [35] “Repackaging can affect the quality of the medicines and the health of the person who takes the medicines because if the medicines have been repacked and are not kept in a proper bottle, that can allow water or air to come into contact with the medicines.” [35] “The health workers advise us not to repack the medicines because, if we do so, we will make the medicines be less efficient.” [35] You know we are human beings, and we are all different. People do different things for different reasons, but we are all adults. We were told the disadvantages of repacking the medicines, and we understand them, but still, people repack. What can be done then? [35] “There are patients who are supposed to take two drugs in a day, morning and evening. So, if you repack, how are you going to remember which ones to take?” [35] There is not any relationship between the way the medicines are packed and taking them. If someone commits to taking the medicines as prescribed, it doesn’t matter how the medicines are packed [35] If the person is repacking the medicines because he is afraid that other people will know that he has HIV, this can affect the way he takes the medicines. Because if, for example, it’s time to take the medicines and there are people present, this person will be afraid to take them because he will be thinking the people he is sitting with will know that he has HIV. In this way, he will not be taking the medicines as prescribed [35] “I think they should remove the box because of its size. If they remove the box, the bottle will not be easily seen, especially for men who like to put the medicines in their trouser pockets.” [35] “When I came here the first time, I saw other people removing the box, and I decided to do the same” [35] “I think the major reason is the size of the bottle. Sometimes when you walk the medicines will make noise, so you will be afraid because you haven’t accepted your [HIV diagnosis]”[35] “I would suggest the medicines be given in blister packs. Blister packs are transparent, but they are well packed. This will make them easy to carry, and patients will feel comfortable putting them in their bag because they do not make noise. "[35] | ART packaging and self-repackaging | Structure |
Easily identifiable ART box | ||||
Bulky packaging | ||||
Plastic bags reduce noise | ||||
Perceived stigma | ||||
Appropriate current packaging | Perceived benefits of current ART packaging | |||
Current packaging valuable | ||||
Health providers advise not repacked ART | ||||
Continued practice of repackaging | ||||
The connection between self- repacking and poor adherence | Relationship between self-repackaging and perceptions of ART adherence | |||
The link among stigma, repacking, and adherence | ||||
The pillbox should be removed | Recommendations for patient-centered ART packaging | |||
Boxes should be small in size and non-descriptive | ||||
Learn self-repackaging from others | ||||
Inconvenient box discarding at home | ||||
Disliked pill bottle | ||||
Monthly ART injections | ||||
''Small pouch'' | ||||
Blister packs | ||||
Regimen potency | Medication controls HIV | ‘‘Want a regimen that was most effective at fighting HIV and prolonging life, regardless of side-effect severity, complexity, inconvenience or pill burden" [45] “Maintain the levels of HIV in control” and “to help me feel better … even on bad days” [42] ‘‘Well, first, of course, would be the efficacy of the medication, what its track record is and everything.’’[49] | Efficacy | Outcome |
Long term side effects (cardiovascular disease, osteoporosis, fat redistribution, raised cholesterol, liver damage, and kidney damage, brain effects) | Long term effects | ‘‘I wouldn’t want it to interfere with my organs, and that’s my concern about HIV meds or any long-term meds that I’m prescribed for an ongoing period of time [.] I would rather be on herbal drugs than to lose my kidneys and liver.’’[49] [Interviewer:] ‘‘Let’s assume [.] you would go to a regimen which means twenty-seven tablets, but there would be not such a high risk for having liver problems, and your renal system would be great, would you do it?’’ [Subject:] ‘‘I would try it, yes.’’ [49] | Long-term effect | Outcome |
Willingness to accept higher pill burden in exchange for reduced long-term effect | The trade-off for reduced long term effect | |||
Restricted outdoor activities | Concerns related to drug side effects | ‘‘If [.] this is a medicine that I have to take for a better quality of health and it interrupts my sleep for any period of time, it wouldn’t be acceptable. I couldn’t tolerate it.’’ [49] ‘‘Dizziness is a problem. I worry about falling.’’ [49] ‘‘You start to learn okay, [if] I know that the diarrhea is going to hit 2 h after I take my medcines, then I’m going to prepare for it.’’ [49] [Interviewer:] ‘‘So there’s a drug which would cause dizziness, but you could go down to one tablet in the morning, and there’s a drug which doesn’t cause dizziness, but you would have to take two tablets two times daily.’’ [Subject:] ‘‘Two tablets two times a day. I probably would go with the two tablets twice a day.’’ [49] [Interviewer:] ‘‘Let’s assume your drug actually results in sleeping problems. You go to your doctor [.]. He says, well, you know, there’s something else, but co-pays are real expensive. We’ve got to have some co-pay. $100.00?’’ [Subject:] ‘‘Yes.’’ [Interviewer:] ‘‘$150.00?’’ [Subject:] ‘‘Yes.’’ [Interviewer:] ‘‘$200.00? $250.00?’’ [Subject:] ‘‘My stopping point would be 200.’’ [49] | Side effect | Outcome |
Restricted physical activity | ||||
Selection of place and time of medication due to fainting | ||||
Medication interfere with employed and non-employed work | ||||
Stopped working due to side effects | ||||
Drug interruption due to side effects | ||||
Willingness to accept higher pill burden in exchange for reduced side effect | The trade-off for reduced side effect | |||
Willingness to pay for reduced side effects | ||||
Skip doses while in the town, drink, or take illicit drugs | Social life inconvenience | ‘‘One respondent, for example, reported being unable to take his scheduled dose because he was stuck in traffic and another reported that she had missed a dose because she had been unable to take a break from her job as a cashier.’’ [45] ‘‘You’re supposed to take that with a meal [. But] I never eat dinner at the same time. It’s just; it’s kind of an inconvenience.’’ [49] ‘‘Many noted taking medications with more complex regimens were problematic when they had to take medications with meals.’’ [45] ‘‘One subject reported that she had stopped taking her medications because she felt so nauseous and weak that she was unable to care for her newborn baby (she subsequently switched to a regimen with milder side-effects).’’ [45] ‘‘One said he felt embarrassed to take his medications in front of his kids and their friends.’’ [45] | Inconvenience | Structure and outcome |
Drug interference with family and social life | ||||
Skipping doses due to important engagements | ||||
Food requirement | Food inconvenience | |||
Missing drug due to inconvenient time | Time inconvenience | |||
Drug stopping due to child care priority | Child care inconvenience | |||
Forget to take the drug due to child-caring | ||||
Drug–drug interaction | Pharmacologic concern | ‘‘My major concern is the interaction between other medicines because I have other conditions. I take other medicines. And they’re very strong, and I think that in the long-run, I can have a lot of complications.’’ [42] ‘‘Participants reported drug interactions in their medical history and highlighted the importance to not only check for interactions with HIV medicines, but also for medicines for comorbidities.’’ [49] | Drug interaction | Outcome |
Coformulation of ART with chronic disease drugs | ARVs also treating other chronic conditions | “Several patients expressed a desire to co-formulate their ART with medication for another chronic illness like high blood pressure: I am wondering since high blood pressure is prevalent in the African American community, if they can have an antiviral medication that also helps with high blood pressure.” [42] “The other thing is I would like for or want this medicine to be in a convenient 3, 6, or 12-months injections.” [42] | Novel ART delivery approach | Structure and outcome |
Hypertension controlling ART drug | ||||
Patients want injectable drugs at 3,6 or 12 months | Injectable drugs reduce the frequency of visit |