Background
Methods
Recruitment and consent
Interview methods
Data analysis
Results
Patient characteristics | SVR | Virological Failure | Non-Virological failure | Total N |
---|---|---|---|---|
Sex | ||||
Female | 11 | 3 | 8 | 22 |
Male | 4 | 7 | 6 | 17 |
Age Category | ||||
Under 45 | 2 | – | 2 | 4 |
Between 45 and 65 | 5 | 7 | 7 | 19 |
Over 65 | 8 | 3 | 5 | 16 |
Place of Residence | ||||
Kigali | 5 | 4 | 6 | 15 |
Outside Kigali | 10 | 6 | 8 | 24 |
Education Level | ||||
None/Not Available | – | – | 2 | 2 |
Primary | 6 | 3 | 4 | 13 |
Secondary | 5 | 5 | 3 | 13 |
University | 4 | 2 | 5 | 11 |
Occupation | ||||
Farmer | 2 | 2 | 4 | 8 |
Professional | – | 1 | 1 | 2 |
Public Servant | 2 | 1 | 1 | 4 |
Religious Worker | 1 | – | – | 1 |
Retired | 4 | 2 | 4 | 10 |
Self-employed | 2 | 3 | 1 | 6 |
Unemployed | 4 | 1 | 3 | 8 |
Hospital | ||||
University Teaching Hospital of Butare | 4 | 2 | 4 | 10 |
University teaching Hospital of Kigali | 4 | 4 | 4 | 12 |
King Faisal Hospital | 4 | 2 | 3 | 9 |
Rwanda Military Hospital | 3 | 2 | 3 | 8 |
Insurance Type | ||||
Public | 10 | 6 | 6 | 22 |
Private | 2 | 1 | 3 | 6 |
None | 3 | 3 | 5 | 11 |
Total N | |
---|---|
Sex | |
Female | 6 |
Male | 4 |
Experience as medical professional | |
Less than 20 years | 6 |
20 or more years | 4 |
Experience providing HCV care | |
Less than 5 years | 5 |
5 to 10 years | 3 |
More than 10 years | 2 |
Barriers – patient perspective
Lack of knowledge around liver health, HCV infection, and DAA treatment
Is [HCV] heritable? … What is it? It means if there is someone in a family who had suffered from it before and it could be inherited … that is what I thought, then … I asked myself whether one of my parents could have had it because I don’t have my parents.SVR achieved, 45 years old
Patient: There came a time though when I had chest pain and I became interested in finding out the symptoms of hepatitis, and the people I asked could not give me a good answer. So I lived with uncertainty.Interviewer: Who did you ask?Patient: The people who I live with...I said, “I’m just getting chest pain, is this where the liver is?” They couldn’t answer...Interviewer: Have you found an answer to your query regarding where the liver is located?Patient: No, not yet.SVR achieved, 70 years old
Before … I completed [the tablets] and rushed to go back there and she told me, when I met the doctor she told me: “Come back after three months”.SVR achieved, 45 years old
[The doctor] told me that “if you finished the medicine the next thing is to go back to [the laboratory] and get the medical tests and see if the viruses in the blood are gone.” That is when I went back to [the laboratory] and I got the medical tests done like it’s normally done and they gave me the results and told me that … it was written “none detectable” and I stopped going.Non-virological failure, 45 years old
Patients go there being like … like given up hope. Therefore, then that person; I can say a counselor can go through [the process with] them and talk to them … that thing can be very good.Non-virological failure, 58 years old
Difficulty in accessing treatment and testing due to financial hardship
Interviewer: It means how many times did you take the medications?Patient: There are two which I was able to pay.Interviewer: There are two which you were able to pay. You took, you took them two times and it was completed?Patient: No, it was supposed to be that of three months but … .that of [the third] month I didn’t find them.Interviewer: You went there twice only. Is there any other [test] which you didn’t take?Patient: Yes, the money was much and I wasn’t able to get them.Non-virological failure, 49 years old
It was difficult to me. It was difficult because finding all that money every month was not an easy thing. It means that sometimes I had to sell other stuff from the household … I mean I have made the household poor...I sold the trees of my forests.Non-virological failure, 58 years old
The suggestion … is that I was from far away … and really I don’t even know where to stay [in Kigali] and the financial means were limited … what I had been asking … because I had been asking from relatives like those whom I [helped] when I still had strength; then some started to switch off their telephones. Then, when [at the hospital] they do not do … they tell me that [healthcare provider] can’t give me a service … that … when they don’t respect the appointment they gave me, they are making my plans fail … you too can understand if someone comes on transportation s/he got from others and be told to go back; you see that’s a problem.Virological failure, 71 years old
Cumbersome treatment process and unpredictable appointment schedules
Another time I can say which was hard for me, is when I got done biopsy. It’s to take a small sample of the liver and put … and put in a thing and they gave me to take it to [hospital] to get it tested by myself. As I asked myself that, “I see it is difficult to … to take this small sample from the liver and it requires to bring it by myself to another hospital, to test it, and they will give you results and bring them back”. I wasn’t pleased by that service because the … I went scared.Virological failure, 50 years old
Then, what I can recommend them, is to receive a patient in the appropriate time when s/he comes to them … when s/he comes to them; without, “Go and come back later, go and come back later” or without a patient sitting there from morning … till the evening.SVR achieved, 58 years old
Those medicines, they should put them closer to where they are, not saying that a citizen from [outside of Kigali] must go to take them from Kigali, they will put medicines near to people, uhm, like at health center or hospitals near citizens.SVR achieved, 76 years old
Barriers – healthcare provider perspective
Heavy workloads and lack of HCV training
Provider: So when I have a lot of patients for hepatitis, others for HIV, I give appointments to some of them by saying, "Come tomorrow so that I can take care of you like that so that I can be able to "...and when I ask them they agree, they can also see that I am alone and they, they facilitate me.10 years’ experience
Provider: Let’s say, like in other programs like HIV and TB, for those you can see that they are reinforced. For those, trainings take place and you find a person in charge of [a disease] here in the institution. A person in charge of HIV and who follows up with what is related to it, who attends all those trainings, and who knows those patients who have a problem. S/he is the one who distributes medicines...but hepatitis there is none.12 years’ experience
High cost associated with HCV treatment
Interviewer: What are the main challenges you come across within providing care to the patient of hepatitis C?Provider: The main challenge is the challenge of means. Patients are required to have medical tests but there you find they do not have means. The second challenge is medication; medications were expensive and were not affordable to all.13 years’ experience
The one who could not be able to find money for the viral test would go back [home], whether he would die or go somewhere else, I don’t know.33 years’ experience
Provider: … But the problem that I have is people who did not came to pick up the drugs, while we called them, those whom their viral load results recommend them to take drugs. Some are the ones who have issue of not having the insurance, and they are unable to get medical tests. Others are people who came from [outside of Kigali], who are unable to get [a bus] ticket which brought them here probably. It’s a poverty issue.Interviewer: It’s the poverty issue that you think can … You called them, but they do not yet come to pick up the drugs. Do you think it’s because of the poverty issue?Provider: Right. They have not come yet. There are some who tell us, “For sure I have no [bus] ticket”.Nurse, Female, 10 years’ experience
Before 2017, I think that it was still difficult; I think that in 2016, it was still difficult. Because that time the doctor would tell [the patients], “Do you need medicines so that I prescribe them to you? They cost …” We told them their price immediately so that s/he understand if s/he will afford it, and if s/he could afford it, then the doctor prescribed them to him/her, if not affordable, told him/her, “If you find means, come back …”.8 years’ experience
Challenges in information availability
I see we don’t have the same understanding on hepatitis, either here in hospitals, either in districts, either in health centers, we have very different information about it, so that a patient may come from maybe the health center being told, “Be aware, maybe don’t do this again, never eat fatty foods again, it is forbidden” And when s/he reach to [the doctor], [the doctor] tells him/her, “No, no, no, you normally get a little milk, drink it.” And you find that s/he is a bit [confused], in fact, they still have problems. They need to be taught, they need … ehh real information, I can say, which is general on problems.8 years’ experience
What could have been improved as I told you above was firstly to have common national policies. I mean guidelines, [the government], as an institution, which is in charge of implementing the national health system, should link them to those of referral hospitals, and they should work together, not working as two separate institutions. Working on the same thing; that is the thing they can bring together.13 years’ experience
And also communication is much more needed, we need [to know], you to tell us that medications are available, free of charge reagents are available, or reagents for sale are available, so that we are aware of all of that because when you know about it, you have [information] to explain to the patient.33 years’ experience
Difficulty in accessing diagnostic technology and results
We need means for doing [a viral load] test as soon as possible, the need of means to look for patients who can’t know that they are sick, like I said. That is where equipment can be placed, and they are available, which make people be aware that they are sick, they diagnose it as soon as possible, they are put on medicines, and they are followed up, without travelling to the district hospital, that goes to the referrals hospital.32 years’ experience
Provider: Getting results, the blood samples of patients, taking a lot of time to come, waiting for RBC to bring them in, so when I call them ... we are not ... still ... So you cannot know where you can get the answer. I usually get results too late and I get to the point where I call my patients and find that some of them are dead and that makes me very sad.Interviewer: That is a challenge.Provider: That is a challenge that makes me very sad. If there would be a prompt service, or if we should have [information] so that we can know how the process is. It can be easier for us.10 years’ experience
“I found that reagents are over.” That’s what [patients] told me and then s/he goes back home. It means [the reagents] should be available all the time. I think that it can help patients very much, because there are some times when the patient goes in the laboratory and finds that reagents are finished.33 years’ experience
Facilitators – patient perspective
Patients’ positive relationships with providers and trust in the health system
I can appreciate all the doctors because they could tell we were all scared of this disease. Doctors are geniuses, he could see and tell if you were scared, and he will befriend you and you would talk and tell you everything you want. He would listen to everything you had to say, both what made and didn’t make sense.SVR achieved, 43 years old
Patient: It’s our government that encouraged me, my country.Interviewer: How?Patient: You cannot imagine how many people were suffering from the disease and how the government helped to access the drugs; it was years that people were looking for [treatment]. Many people were afraid, some people had died, yes there were [people] who are dead. So, I cannot forget that governments help us a lot, it’s really like Rwandans.Virological failure, 46 years old
Support from family and community members
Interviewer: Then, from when you were sick, your relationship with people you live within your home or even neighbors, relatives and even friends, their attitude toward you, how did they take your illness? Was there a change in their attitude toward you?Patient: No, we live well together.Interviewer: The way they were socializing with you; were there visiting you; how was it?Patient: Uhm [agreeing], they visited me, even all my neighbors.Interviewer: Is there anyone who kept their distance and feel …Patient: [Laugh].Interviewer: Being afraid of you or you, feeling isolated from the public?Patient: No, they visited me. I am in a Christian family and God’s child, they visited me and gave me social and economic support and I really felt happy then.SVR achieved, 58 years old
Facilitators – healthcare provider perspective
Lack of stigma and a supportive community
The fact of being in a group like those first ones we know, it helped them, [because] you can feel you are alone, then feeling you are the only one can cause you to be depressed, to feel that there is nothing you are working for, that those medicines will not heal you and then not be able to … To listen from your colleague maybe to tell you, “For me, I got healed or for me it is like this” so that it gives encouragement to continue.12 years’ experience
It means this fear and having stigma in the society, it didn’t happen. Even their relatives, those who bring them to the health facility, those who take care of them, you couldn’t find them with fear, because this thing, we had first removed it, in those news [stories] we provided on television, on radio.32 years’ experience
Dedication of healthcare providers
You tell the patient that, “Let’s agree, I don’t want you to come and miss me, before coming first call me, this is my phone number. A telephone is not very expensive, they are easy to find.” And s/he comes knowing that s/he will find you, not the other [patient] who will come and wait, having travelled for nothing. To have the support to get all information they need, whenever they need it; and s/he calls you or when s/he knows that you are not [answering the call], s/he sends you SMS and you reply to it later. It’s the greatest support we gave to patients that help them to have adherence.32 years’ experience
What motivated me is how the hepatitis C medicines are available and people are getting cured. I have a database of people whom they found got cured because their first and second medical test resulted negative, and that encourages me to keep taking care of hepatitis C patients through being closer to them, making follow-up day to day on how they feel, checking the reality of what they say on medicine [adherence], checking really if the hepatitis C gets cured. So making that follow-up and through searching and reading the internet made me like this job. I did not attend any related training, but because of being very interested in the work, I read books and read also on the internet, all of those made me more interested.10 years’ experience
Patients experience only minor side effects and are motivated to engage in care
I think the reason is that those medicines do not normally have side effects. If a patient takes medicines for one month and finds he has no problems with those, s/he also takes the second month, the third month, and as result the patient takes medicines adequately.14 years’ experience
Knowing that you have that chance of knowing a person the disease killed, and you are aware that you are going to get well, you are no longer going to die; I can say that those are the two things, two which drive adherence and make Rwandans patients take medicines well, as it is intended. The third one which is visible, when you are going to look others in other countries they have, comparing for example in America, in America, hepatitis C, it is a disease for people who drug themselves using needles, they are young, coming from a society which are bad, which are poor, or have lost their mind like that. Hepatitis C patients in Rwanda, it is a diseases for old people, the average of people we have, they are more than 40 years old, we have those who are between 70 and 80, we give medicines, we have been giving them medicines and get cured, they are old people whose mind is normal, different from, by comparing ourselves with Americans who have people with hepatitis C which is a disease for drug abuse people, they have lost their mind. That is also something which, whether the patient you talk to, they listen, are mature, are responsible, which make them take medicine.32 years’ experience
Discussion
Barriers | Facilitators | |
---|---|---|
Patient perspective | Lack of knowledge around liver health, HCV infection and DAA treatment | Patients’ positive relationships with providers and trust in the health system |
Difficultly in accessing treatment and testing due to financial hardship | Support from family and community members | |
Cumbersome treatment process and unpredictable appointment schedules | ||
Healthcare provider perspective | Heavy work-loads and lack of HCV training | Lack of stigma and a supportive community |
High cost associated with HCV treatment | Dedication of healthcare providers | |
Challenges in information availability | Patients experience only minor side effects and are motivated to engage in care | |
Difficulty in accessing diagnostics technology and results |