Table 2. Representative quotes reflecting patients’ preferences across the attributes in a TPP for leishmaniasis treatment.
|
TPP Attributes and themes [] Authors’ remarks |
Representative quotes* |
| 1 Safety/tolerability | |
| Safety monitoring requirements | Back then I didn’t want to [be hospitalized] because I had the feeling it was more relaxed when you can go home every evening. But thinking back, I am now of the opinion it might have been better just to stay there. […] Often, I didn’t know in the evening at home how I should lie down, because my kidneys hurt, and I was very nauseous. I was given Zydis to take home, but sometimes it wasn’t enough. Then I had taken too much already and didn’t want to take any more. Then my ankle hurt again so much, then I looked at the clock, counting hours until I had to go to the hospital. 3 weeks long, that was a bit exhausting. (AT03) |
| Tolerability |
Well, at times I feel a bit scared [of the treatment], but I would not back down, I am going to continue, because I got in, and I am going to finish it. Besides it is the only way to get cured. [I fear] too many shots. So many injections, and the reaction is really strong. [. . .] Well, right now I would say [as a message to people with leishmaniasis] it is best to use the medication even if it’s uncomfortable and painful. (CC09)
If we could choose to not have side effects, it would be ideal, right? The problem is that it is part of the treatment … (BR09) [When they told me I had leishmaniasis] I thought "once again that drug that fucks you up". It appears that drug is toxic and leaves you sequels. (CP08) |
| Description of AEs | The treatment for me [intralesional Glucantime] was super cool. I had imagined that I could have side effects, but it was very good. I didn’t feel anything. Only the days of the infiltrations I had some swelling, which sometimes bothered me a little. (BR03) |
| Fears about (second) treatment due to AEs |
That thing it’s so strong. . . Just look at the drug they are injecting you. It’s like a poison. It seems to be a common pimple, but what they inject you for that pimple it’s what hits you hard. That’s what screws you up. The cure itself fucks you up from the inside. (CP02)
|
| Preference for lower volume of drug | If there isn’t another [treatment], I would take this one. I think the dosage is too much for one person though. Maybe if during the day the amount of drug is less, I think the body would assimilate it better. (CP06) |
| Trade-off: Cure vs. tolerability | To tell you the truth, I really don’t know [anything I am afraid of in terms of treatment], as long as I get cured [. . .]. No, I’m not scared about any risk. (CC08) |
| 2 Contraindications | |
| Reasons for contraindication | I had had few months before a cardiac diagnosis (arrhythmia) and I was submitted to a heart ablation. Despite having been cured of the arrhythmia by ablation, the leishmaniasis treatment was considered more complicated and I was hospitalized. […] Yes [I received amphotericin B]. . . they were afraid to give me another treatment, the first line treatment, because of my previous heart condition. But today I know it should have been different. (BR01) |
| Self-care | I think not everyone has the same capacity of process the medicine. There are weaker people and so. But [leishmaniasis] can also appear again because the person doesn’t take care of himself/herself, so the treatment doesn’t work as it should. […] My nephew was one of those who smoked during treatment, so the disease got worse. I think if you drink, smoke, stay up late and do the things you should not, then that’s bad. […] That’s why I’m taking care of myself a lot. (CP10) |
| Shared decision making | […] As I lost contact with the health promoter from there [where I live], my sister and my son told me that it was better to have the treatment here, in case there were some kind of adverse reactions to the medicine. So, the doctor told me what we could do and we agreed on a health center in near La Nave [a location in Cali, Colombia]. (CC09) |
| 3 Efficacy | |
| Absence of sequelae |
[I think in the future I will have] maybe heart problems. Sometimes you hear that you can have problems because of the crazy amount of medicine you received. [I am afraid of] not having the same strength again. […] You make physical effort and the body doesn’t respond the same way. (CP06)
Scars do not bother me much. But […] the doctor told me that the drug was strong […], what if that leaves me with the pain, what if it will not stop? That’s why I do not want that the treatment be extended further. (CC09) |
| Trade-off: Cure vs risks related to treatment | Yes, I do [still want to be treated, even thinking that the lesion does not threaten your life and the remedy has risks]. […] [I could not keep this lesion, but] I would look for a treatment every way. (BR08) |
| Trade-off: Cure vs. scars/aesthetic results | Look, the first thing I asked the doctor: " Will I have a scar?" He said "probably you will get a mark, a colour change in the skin" "But will it heal?" "Yes, it will". I’m going to travel on vacation in few days, and I was worried, because I’m planning to go to the beach and to use a bikini. Then my husband asked me: "Will you find a wider bikini or something like that?” and I never had to think about that …. […] The most important thing is that I am healed. […] If you can live with another scar caused by another injury, why not? (BR01) |
| 4 Formulation | |
| Oral | The one I’m taking now that is oral, it’s less traumatic than the first one I had. [. . .] This one suits me better, I mean, I feel much more comfortable. [. . .] Because you don’t get sick leave, I mean, you have to continue working somehow, and every day you have to go to get an injection, that is traumatizing (laughs). (CC01) |
| Parenteral |
In my case, when I came here for the treatment, I did not sleep thinking about the injections. [. . .] I was up all-night thinking about the injections. It was horrible. […] It is the only thing I could think about. (CC08)
I had a little trauma in my childhood–I have fear of injection. I complain because I had a surgery years ago when I saw the entire procedure, I wasn’t anesthetized properly. […] For me, on a scale of one to ten, it’s ten. [. . .] But I’m not afraid of the medicine, the drug itself. (BR05) |
| Perceived efficacy of parenteral administration |
I’ve always preferred injection. [. . .] I like it. [. . .] I think injection produces a faster effect. [. . .] It’s painful, but it’s better (BR06)
Pills for me don’t work. […] Every time I feel sick I go and say what I have so they can give me injections. I think that’s the best thing you can have, because it goes directly through the bloodstream and starts killing the viruses. [. . .] For leishmaniasis I think the injection is the best. [. . .] [I think an injection in the wound] would be good. I guess you would receive fewer doses. Also, stronger! So it works faster. (CP10) |
| Local vs. systemic administration of parenteral treatment |
With the second, it was worse [regarding symptoms]. [. . .] I was very feverish and my heartbeat was fast. [. . .] [I think this is] maybe because of the crazy amount of medication they inject you. [. . .] For me intravenous would be good [as the ideal treatment]. You suffer less. (CP03)
For me [the ideal treatment] wouldn’t be applied in the buttocks. For me it would be appliable as a serum (the patient used the term ‘suero’, a generic term for intravenous infusions–author). […] 20 syringes are a torture. [. . .] I was constantly affected psychologically because I always thought I was going to get injected in the same place, and the scar was going to remain where I had the wound. [. . .] If by any chance I get leishmaniasis again, I’m quitting the job. […] All those injections. […] It leaves you marked for your whole life. (CP04). |
| Trade-off: Pain due to injections vs. perceived disease severity | [The ideal treatment would be] pills, creams or something not based on syringes. [. . .] The injections are very strong. [. . .] You have to go through all the needles for such an insignificant thing. (CP09) |
| Lack of alternatives: Injections as only treatment option | The treatment is already okay, because there is no other way but the injections. (CP02) |
| Topical | Well, [I think the best treatment to cure Leishmaniasis would be] something you just put there. [. . .] That easy. Something you smear it on and no more. [. . .] I was told that if one does not act upon right away, it may go through the bloodstream and reach the liver. (CC08) |
| Preference for creams | [. . .] Hopefully they develop a cream that one could put on. But I have a question, why so? Why is the drug for the body [administered via injection,] knowing that one has the lesion on the skin, and the parasite is supposed to be there? (CC08) |
| Thermotherapy | [As I have access to scientific publications, I did some research and noted] that heat treatment is a standard low-cost treatment. [. . .] Actually, heat treatment helped me best, but it was never mentioned that it could be tried. [. . .] I would advise everyone to try a heat therapy themselves if it’s not being offered to them. (AT04) |
| 5 Treatment regimen | |
| Optimal treatment duration | The shorter [the treatment duration], the better. [. . .] You can recover faster and you can be completely healthy. [. . .] (CP07) |
| Trade-off: Treatment duration vs. cure |
It is a long treatment. . . but the important thing is to be cured. [. . .] Absolutely. (BR06)
|
| Administration of therapy outside of treatment facility due to long treatment duration | I had to stay about fifteen days here, I got about 20 or 30 [injections here in Tumaco]. And the others I took home with me. Because in the countryside is where we have our farm, and we just couldn’t abandon it. [. . .] [The doctor] told me, that once I got the shots I (couldn’t) keep working, but I just can’t stop working. [. . .] A cousin gave me the injections, [. . .] in Gualao. [. . .] Here in Tumaco, a sister-in-law gave me the shots. She is a nurse. (CC03) |
| Recovery time after treatment [Before release to combat area (soldiers)] |
Because the soldier finishes the treatment and is sent back to the Battalion right away. […] Or they leave you here if you’re not good enough. […] So, for me, some recovery days would be okay. Like that, the wound can recover well. (CP02) |
| Compliance [Fear of disease progression] |
The treatment is the only thing that can cure leishmaniasis. [. . .] [If I decide not to have treatment] the wound keeps growing and growing and it will be my problem because I decided not to get the treatment. So, when the wound gets bigger, I will have to repeat the treatment like other partners that finish the first treatment with Glucantime and it didn’t cure them because the wound is too big. (CP08) |
| Trade-off: Compliance vs. side effects | [I received the injections] into the vein [. . .] every day, I was tired, it was painful. . . I had to come here every week, I had to have my blood collected, the other morning I had to collect blood again and receive the medication in my town. . . it was painful, yes, but I did everything correctly. (BR06) |
| Low compliance due to fear of injections | Yes, really, I have [been compliant] with the pills, I have been taking them, she prescribed three daily; but with the injections, I was not. (CC07) |
| Treatment interruptions due to AEs |
[They sent me 60 injections and I received 48] because] I couldn’t tolerate it anymore, I couldn’t even sit down, nothing. [. . .] So I rested for three days and then started again; so that’s why I think the treatment didn’t do me good because later, […] it came back. (CC07)
I went in and then I received the first Pentacarinat. Then I got problems with my blood glucose, extremely low blood glucose levels, there I wasn’t well. […] And then I think [I took] 2 days of break and one more infusion, 3 days break, one more infusion, about that. . .perhaps about one week or a little more in the hospital. (AT03) |
| Treatment frequency | If we had an oral medication to treat, a faster treatment, it would be great, because there is a certain disorder in going daily to receive medication. If there was something to take home it would be better, it would be easier too. (BR01) |
| Trade-off: Place of administration vs. treatment frequency | [When doctors were discussing treatment options with me,] they asked what would be my preference: come here to receive the infiltration once a week or receive the medicine every day in my town. I decided to receive the remedy here, […] because once a week is much easier. [. . .] It was a blessing. Since the day I got here, my lesion is just improving! (BR08) |
| 6 Target population–Quotes and detailed description are available in S2 File | |
| 7 Cost | |
| Administration of injections | I had to pay to my cousin [to get the injection]; my sister-in-law did not charge me anything. But my cousin, I had to pay her, 20,000 pesos. [. . .] She told me to give her whatever I felt like. So, I gave her 20,000 pesos. (CC03) |
| Consultation fees | In my town there is no infectious disease specialist. [. . .] I mean, there are several physicians on the private network, but considering my financial condition I couldn’t afford it. I would have to wait until it was scheduled by SUS [Sistema Único de Saúde, the Brazilian public health system], in Belo Horizonte. It usually takes too long. (BR05) |
| Transport costs |
Ah, it takes 1 hour [. . .] by canoe [to reach] Tumaco. By boat [with motor] 20 or 30 minutes, but sometimes it’s hard, because sometimes you do not get a boat or a canoe to come. I have my own [aquatic] vehicle to come if there is an emergency, but [sometimes is not possible to cover the costs by transporting passengers or goods] and one uses a lot of gasoline […], so it is better to pay the 15,000 pesos as a passenger because if not, you buy 100,000 pesos of gasoline for a round trip. Things are so expensive. (CC03)
It was tough arriving here. I had to pawn my cell phone, I had to arrive to my sister’s and then she lent me money. [. . .] No help at all from the army, despite the fact that I was working there. They took me out, they gave me their permission and that’s it. [. . .] Only my brother-in-law lent me the money for these tickets to come here. (CP02) |
| Profession-related costs (inability to work, or change of occupation) |
My payment is based on days of work. [. . .] I want to do my treatment. [. . .]. No work, no money. I’m pleased to get here and do the treatment. [. . .] [It is] impairing my income, [. . .] [but] No, it doesn’t bother me. [. . .] I’m [coming on my own] [. . .], by bus. [. . .] I paid the ticket. [. . .] (BR08)
I was unemployed [when symptoms started]. I’ve been looking for a job the last months. [. . .] Several employers told me that [they couldn’t hire me because of the wound, an ulcer in a visible area on the arm]. They told me directly [that this was the reason]. [. . .] [This happened] twice. [. . .] After that, I gave up, I said "there is no way". [. . .] My concern is [not about the disease or the possibility of future complications, but] about work. (BR02) |
| Having to stay away from home for treatment | I live with a family member, I live there and thank god, they have helped me. [. . .] Right now I’m not doing anything [work-wise], because I work with leather, I make belts and that kind of things for farm animals. But not right now. (CC09) |
| 8 Perceived barriers–Quotes and detailed description are available in S2 File | |
| 9 Other development needs | |
| Investments in research |
I think we must invest more in research, to improve things. Because I know, in Brazil, at least based on the information that I had, we have just one medicine and that this treatment has many risks. (BR05)
You should keep on researching about the cream. Hopefully soon it becomes more effective than the injections or maybe it can help heal quicker, that would be ideal. (CP01) I would like that for leishmaniasis there was something like a vaccine. […] For example in my case, I go through this treatment now, I spend a lot of time and all that stuff, effort; and sometimes one has to be in those areas where the disease remains […], and what if one gets infected again, then he would have to go through the same treatment again. (CC09) |
| Information and dissemination activities | [I would provide] information, more dissemination of information about the disease. You need to explain to people how the disease is transmitted, that there is treatment and people need to be seen by a doctor, […] they shouldn’t think it is a normal wound. (BR05) |
* Patients’ unique identifiers contain a two-letter code corresponding to the study site (AT-Austria, BR-Brazil, CC-Colombia/CIDEIM, CP-Colombia/PECET).