Understanding Barriers to and Facilitators of Prostate Cancer Screening Among Men in Uganda Prisons - Jackson Orem
January 19, 2023
Jackson Orem, MBChB, MMed, PhD, Medical Oncologist, Executive Director of the Uganda Cancer Institute, Uganda, Honorary Lecturer at Makerere University, Kampala, Uganda, Co-Director, UCI-Fred Hutch Collaboration
Charles J. Ryan, MD, the President and Chief Executive Officer of The Prostate Cancer Foundation (PCF), the world’s leading philanthropic organization dedicated to funding life-saving prostate cancer research. Charles J. Ryan is an internationally recognized genitourinary (GU) oncologist with expertise in the biology and treatment of advanced prostate cancer. Dr. Ryan joined the PCF from the University of Minnesota, Minneapolis, where he served as Director of the Hematology, Oncology, and Transplantation Division in the Department of Medicine. He also served as Associate Director for Clinical Research in the Masonic Cancer Center and held the B.J. Kennedy Chair in Clinical Medical Oncology.
Charles Ryan: Hello. It's my pleasure to introduce, Dr. Jackson Orem, who is one of our Prostate Cancer Foundation, Pfizer Health Equity Challenge Award winners, with a very interesting project on Barriers To And Facilitators Of Prostate Cancer Screening Among Men In Ugandan Prisons.
Dr. Orem is a medical oncologist, and an honorary lecturer at the University of Makerere, and he's the Executive Director of the Uganda Cancer Institute. Dr. Orem, it's a pleasure to meet you. And congratulations on winning this award, and I look forward to hearing about the work that you have ongoing.
Jackson Orem: Thank you. It's a pleasure being here. So our study is about Barriers To And Facilitators Of Prostate Cancer Screening Among Men In Uganda Prisons, and I'm doing this on behalf of my colleagues that I'll mention at the end of the slide.
As a background, research has shown that prostate cancer is increasing at a rate of 5.2% per annum, and as few as 5% remain ever got screened in Uganda. So that means, screening level is quite low. So our team is looking at the reason for this, and the best group that we thought we could start with, are those who are disadvantaged. And of those, those who are in prison, we thought, are the most vulnerable. So we decided to look at barriers and facilitators of prostate cancer screening among men in prison.
Our aim is to look at what we can learn from this group that can be applicable, both in the prison scenario, as well as in the general population, given that the level of screening is very low, and yet, the burden of prostate cancer is quite high among men in our country.
Our specific objective is to identify the perception of men in Uganda prison, regarding screening for prostate cancer, and to identify cultural factors, or barriers and motivators among these men, and to identify interventions or strategies that we can put in place for these men.
The design of the study is an exploratory sequential mixed method design. We are going to use both qualitative method, as well as quantitative, but the emphasis is on qualitative, where I will conduct focus group discussion, as well as key informant interviews.
And we actually, from the quantitative perspective which I'll use, a cross-sectional study design in the survey, which we'll do in all the prisons, major prisons in Uganda.
Of course, we wanted to gain what the perceptions are among this men, and we did the proportionate sampling of for the baseline. And we actually went to up to 2,565 respondents with the interviews, which were administered using a questionnaire. We received ethical approvals from all the levels of research regulation in our country. And for the data analysis, as I said earlier, we are using qualitative data method. And the instrument that we are going to be using for analysis is Dataverse version 12.
Our findings are quite interesting, are from the focus group discussion. The most important findings are the burden of disease, in as far as the respondents are concerned. Which is quite actually low, given the age distribution of this population. But we also found out that the level of awareness is actually quite low, in as far as this population is concerned. And this is a reflection of what happens in our population in the community.
And in as far as the barriers are concerned, the most important barrier that we found out was actually, lack of facilities for screening within the prisons. So of course, the other barriers, the health worker knowledge or awareness is also quite low. And in addition to what I mentioned earlier, the lack of the screening facilities within the prison.
Then, of course, what would be now the best way to move forward? And of course, as I said earlier, our aim is really to see how we can triangulate this information, both within the prison, as well as in the general population. And we expect to produce some materials that will actually be able to help us in providing this information.
So as conclusion, in our recommendation from the data that we have analyzed so far, we have noticed that the screening rate among men in prison is very low. And actually, there are several barriers that hinder these men from screening, in addition to the lack or of awareness. And this includes also, lack of information materials that can facilitate screening services in this population.
So our recommendation is going to really focus on the issue itself, which is the awareness. We want that to be increased. And then, of course, also development of screening program within prison itself. And we also want to influence further our policies, so that screening is also increased in the general population. And of course, this means they need to build capacity within the prison itself, as well as within the health system. And there's need for outreaches that should be done for the prison, with the aim of both, creating awareness, and also providing services. And the same should also actually be done in the general population, given the high rate of prostate cancer that we have in our country.
So I want to, at this point, conclude by thanking our sponsor, Pfizer, as well as the Prostate Cancer Foundation. And of course, our collaborators, the Uganda Cancer Institute, supported by the King Caesar University. And then, the authorities within the Prison Service here in Uganda, they have been very, very receptive. Without their support, we wouldn't have accessed this population. That means, we wouldn't have done this important study. Thank you.
Charles Ryan: This is a very interesting project and an excellent presentation, and I really look forward to hearing more of the data as it comes out. Tell us how you became interested in the first place, in studying this particular population in prisons.
Jackson Orem: Yeah, that's a good starting point. Of course, our aim was to look at the entire spectrum of care for people with prostate cancer. And the starting point would always be to know the burden of this in our community. But unfortunately, there is not a streamlined way of screening for prostate cancer in our country. PSA and other ways of testing is quite expensive. So in order to understand exactly the magnitude of the problem, and whether there's equity in the way of testing is done, we decided that, let us go to a group that seems to be disadvantaged. And if we can study that group, and we get something out of it, then we are likely to actually be nearer to understanding what the main issue is, in as far as the general population is concerned. So that is how we zeroed on the prison population. And of course, one other factor there is that, if it can be done among the prisoners, then most probably, it can also be done among the other vulnerable groups that we do have in our population. So that is the basis.
Charles Ryan: So it's really the identification of prisoners as a disadvantaged group, a sort of, if you will, a model disadvantaged group; in which, you can potentially find, perhaps, the lowest rates of screening, I think, in the population. And I suspect, that's what you've succeeded in finding at such a low rate one fifth of the general population.
Jackson Orem: Exactly. Yeah. That is it. Yeah.
Charles Ryan: So you then have conducted a series of group interviews and focus groups in the prisons. Tell us a little bit about how that has gone, in terms of process and uptake. Was it something that you found to be easier than you thought was going to happen, or more difficult?
Jackson Orem: Right. So actually we did, because the thrust of this study is the qualitative component. So we did the focus group discussion, and then, followed by a key informant interviews. And we went through all the prisons, the major prisons in the country, looking at them from a perspective of the ones that are in the city, and then the ones that are in the countryside, or in the villages.
And of course, at the beginning, given that this is a confined group, we thought it would be quite difficult. But one of the strategies we kind of brought on board was to make sure that there is as much involvement as possible of the authority within the prison. So we kind of got all those approvals, and actually, we were pleasantly surprised that the process was not as difficult as we had thought. And then also, we found out that actually, even within the prison, the prisoners were actually very excited about participating, and as well as also the warden within the prison. So it went very well. So far, we did all the 20 focus group discussion, and the 30 key informants interviews. So all that is now collected. We are in the process of analyzing and understanding deeper our findings.
Charles Ryan: And what's interesting is, as you point out in your data, over 97% of the prisoners had never been screened for prostate cancer. What is your estimate of the rate of screening in the population outside of the prisons in Uganda?
Jackson Orem: Well, that's a good one. Actually, I would say the rate of my, I guess, the rate of screening in the general population is maybe right between about 10% in the general population. But that is also a little bit selected. Because it costs money, so that means actually, maybe it could be lower, slightly lower than that.
Charles Ryan: Sure. Okay. And so, just tell me a little bit about prostate cancer in your country, generally. Are most individuals who are being diagnosed found to have metastatic disease at diagnosis? Are you seeing a predominance of individuals who are presenting with lower urinary symptoms? And what is the general flow of care for a person suspected of having, or having been diagnosed with prostate cancer in Uganda?
Jackson Orem: That's a good question. First and foremost is that, most of the patients with prostate cancer are presenting already with symptoms. So they're presenting with advanced stage disease. Actually, up to, I would say 85, 90% of the people who are presenting, who are diagnosed, already have metastatic disease. So that means that actually, getting a low stage disease is not very easy, because of the difficulty in identifying and accessing, actually, a testing facility.
But that is also further compounded by the fact that, in most cases, people who present with urinary symptoms would've gone through several health facilities with different diagnoses. Of course, looking mainly at infections. By the time diagnosis of prostate cancer is made it's rather late event for those who are presented early with symptoms. So that is the scenario.
Charles Ryan: Now, did you diagnose many cases of metastatic prostate cancer among the prisoners you sampled?
Jackson Orem: Incidentally, no. Actually, the population in prison tended to be actually, younger. I see so from the data that I presented now. And that means that, our attempt is actually very opportune. Because this population, with the information that we give them, and awareness that we create to them, once they go out of prison, they are likely to maintain that, because we have already educated them.
But secondly, we also expect that, there's going to be some ripple effect to the community because they'll go with that knowledge, as well as creating awareness. So we are thinking that this could also be actually, a way of creating a change agent within community.
Charles Ryan: Sure.
Jackson Orem: Given that they would've learned something from prison.
Charles Ryan: Yeah. That was my next question, which is, what is the general flow of these individuals out of prison? Are these gentlemen serving shorter sentences, or are they there for many, many years? Typically.
Jackson Orem: I think most of them, I would say, intermediate. They're serving maybe, between five to 10 years in prison.
Charles Ryan: I see. Okay.
Jackson Orem: So yeah, that means there's a whole spectrum. The longer ones, of course, hopefully, our attempt at creating awareness, and also sensitization, eventually within the prison system we'll also create a service. So that means, the longer those who are staying longer, will actually benefit from a service within the prison. And then, those who are staying shorter, when they go into the community, hopefully, with the data that we are coming up with, we are likely, actually, to put some demand on government for policies, so that testing for prostate cancer becomes something which is a priority too. So that means, those groups are likely also to benefit if those policies are put in place for testing in the community.
Charles Ryan: Right. And so, the other big picture item is that, of course, we are focused on prostate cancer, and screening for it, and detecting that disease, but of course, men of this age face many health concerns. And I always want to know, if you're doing a screening program, what other health problems, or health education, might you involve, whether it's other cancer screening or cardiovascular hypertension? And have you seen any ripple effects, even within the prison population, of other health concerns arising through the PSA screening program?
Jackson Orem: Oh yeah, that's a very good point. One of the thing that actually, you should bring to your attention, is that in our community, or in our country, right now, screening is almost synonymous with the women problems. That means, screening for cervical cancer, screening for breast cancer. There has been very little emphasis, in as far as men are concerned.
Charles Ryan: I've heard that from other colleagues.
Jackson Orem: But of course, our data is showing that prostate cancer is a big problem. So I think, this is also an advocacy tool, to highlight the issues of men health.
Charles Ryan: Yeah.
Jackson Orem: So I think, yes, issues like testing for prostate cancer will just be, I would say, the entry point for also the other issues that affect men. Including, cardiovascular disease, including HIV, including sexual transmitted diseases, and many others. So I think to me, this is really an entry point.
Charles Ryan: I agree with you, and I think that, that's an opportunity that many don't understand. We of course, are looking, our foundation, of course, is looking to reduce the death and suffering from prostate cancer worldwide. However, I see a real positive ripple effect that comes from programs like yours. That we may never be able to measure, but we may reduce, as you've said, HIV transmission, or cardiovascular disease, simply by making men aware of their health, and bringing them in for a point of contact with a healthcare provider.
Really fascinating program that you've started. Congratulations on winning this award. I look forward to hearing and seeing more of your data, as it is presented and published down the road. And welcome to the Prostate Cancer Foundation community.
Jackson Orem: Thank you very much. I really feel honored, and I'm grateful that this opportunity has come our way. And I see this as a way of also bringing us into the fold of the people who are working on prostate cancer, because it's actually a very big problem in our country right now.
Charles Ryan: We look forward to working on that problem with you.
Jackson Orem: Thank you. Thank you.