May 5, 2023
Struggles and Perseverance: A Glimpse into Ovarian Cancer Care in Developing Countries
Program Director at World Ovarian Cancer CoalitionGuest
Frances Reid, program director at the World Ovarian Cancer Coalition is back with an update on the Every Woman Study, the first of its kind to quantify global challenges women face with diagnosis and care access for ovarian cancer. Building on the survey's success, Frances explains how they have pivoted from online to other data capture methods with the help of healthcare providers in some of the most remote settings in the world. The stories she shares give us a glimpse into the incredible challenges women face in middle- and low-income countries.
“It took 18 hours in an ambulance that she and her family had to pay for. And she received the surgery. And then she went home to recuperate, and the team were trying to encourage her to come back. But the woman and her family couldn't afford to raise the money to come back.”
You can find out more information and follow the progress of the Every Woman Study here.
OK so a now recording. And I'm just going to get started on the intro. In 3, 2, 1. Back in November 2021, Francis read, program director at the world ovarian cancer coalition, joined me for an update on the everywoman study, the first ever study of its kind, addressing the evidence gap relating to the experiences of women with ovarian cancer around the world.
Now the goal of the study is to ensure every woman has the best chance of survival from this deadly disease no matter where she lives. Well, today, Francis is back for another update on the study's progress and what we can expect in 2023. Welcome, Francis. Thanks so much for being here.
I touched on the purpose of the every women's study just now in the introduction, but could you explain to the listeners a bit more about the study's history and objectives? Thank you, Hannah. And it's lovely to be back. So, yes, in 2018, we wanted to establish a patient experience evidence base, as you've described.
And we developed and ran an online survey, which was completed by over 1,500 women in 44 countries. And it gave us a clear direction on the core challenges, if you like, that women face in terms of being able to survive and live a good life. But it also gave us opportunities. And what was really interesting was that despite these common issues, each country where we were able to show there were country differences had a different mix of the problems.
So, for example, in some countries, early diagnosis wasn't such an issue. It was quite a bit easier to achieve. But in other countries it took a lot longer. But maybe in the country with early diagnosis, they had problems accessing the best possible care for women.
So it really gave us this picture that by looking at what was going on within a country and comparing it to other countries, it would give us opportunities for progress. So that was the 2018 study. However, there was a great big caveat, and that 95% of our respondents came from high income countries. And in actual fact, only 30% of the women in the world live in high income settings.
So it meant there was a real data gap for low and middle income countries. And we know anyway, from literature and from commentary that data on cancer isn't sufficient in many low and middle income countries to assist with things like planning and advocacy and so forth. So we really wanted to try and address that issue. So we partnered with the international gynecological cancer society, and we've developed a low and middle income edition.
It's also really important because ovarian cancer is on the rise. So there are around 314,000 cases a year now and 210,000 deaths a year globally. That's set to increase 40% by 2040. But actually, when you look at where the biggest rises are going to be, they're much, much bigger in developing countries.
So, for example, I in Zambia because I was looking at the figures just a couple of days ago that cases are due to increase by 122% in the next 20 years. And this contrasting with the falls, the expected falls in cervical cancer by 2040 through the amazing work of the cervical cancer elimination strategy. It's likely to mean that ovarian cancer will be, in fact, the biggest gynecological cancer killer in the world. So it's something that we feel we really need to start looking at now, and we need to start developing that evidence base and helping countries determine what their best course of action is going to be.
So know, we've altered the study to make it achievable in low and middle income countries. So before it was online. And it was a very lengthy survey. Now it can be done on paper in a clinic.
It's been run through hospitals and it can be done by email or WhatsApp links, and it can be done with a researcher interviewing a woman as well. So it's really opening up accessibility. It's in 31 languages. We have teams working to try and implement the study in 24 low and middle income.
Countries and we have around about 100 and 1915 hospitals involved around the world. So it's actually turned into this mammoth project, but we hope will actually really help develop a solid evidence base for the global picture. But also importantly, we're trying to get enough data from each country that each country will have its own standalone picture and can use that to help advocate for change and to prioritize what they're going to work on. Thank you for explaining more about the amazing work you're doing.
I mean, those statistics are really shocking. Before we go into some of the results from the study. So far, could you explain more about why the disease is so difficult to diagnose? Because I think this is something that makes it, you know, so deadly because initial symptoms are so difficult to diagnose.
Yeah, that is correct. It's very difficult to diagnose. We know from our first study the average time to diagnosis from a woman experiencing symptoms was 31 weeks. Which you know, well over half a year.
And we know time makes a difference and it might impact on the stage of diagnosis. It certainly impacts on a woman's ability to start and tolerate treatment. And we know that actually many women don't even get as far as treatment because they're diagnosed when they're so poorly. And in such a bad condition.
Overall, five year survival rates, even in high income countries, are below 50%, and most women are diagnosed at advanced stage. That all sounds terribly depressing and gloomy. There's no Screening Trial for it. But what we do know now is we know more about the symptom profile for the disease.
So the symptoms are symptoms that women can easily attribute to other conditions and doctors can easily attribute to other conditions, things like bloating. But it's important to realize it's persistent bloating. It's not bloating that comes and goes. It's bloating.
It's bigger and bigger and bigger. It's actually abdominal distension in a woman needing to pass urine more frequently, more urgently, and it gets worse and worse. And these patterns of symptoms, abdominal pain, pelvic pain and difficulty eating, they're feeling for very quickly not being able to eat meals like you used to at all. These are important in the context, and we know that out of 10 women from our first survey.
Experience these core symptoms, some of these core symptoms. And that was regardless of age, their age, the stage of their cancer and the type of ovarian cancer. Ovarian cancer is not silent, the symptoms. So it's about understanding the nuances and making sure that women seek help as early as possible.
And we've had developments in understanding the diagnostic tests better as well, trying to work out who might have a malignant tumor. This is something more benign and we have new treatments coming through as well. So it's just really important that we do what we can in the absence of something like a screening program, to shorten the time to diagnosis. So that women have the best chance of having a long and a good life.
But women need to know something is up or recognized. Something is up with their bodies, visit their doctors if they can work out that it's possibly ovarian cancer, it's worth mentioning it. But just knowing something is wrong and going to your doctor and persisting and and if need be mentioning ovarian cancer would be a great first step. And it's really important that doctors realize the symptoms of ovarian cancer as well.
And when to start initiating of the tests. And so, yeah, it's a difficult thing, but there are all possibilities for progress. You know, we in our first study, we showed differences. You know, it took half the time in Germany to be diagnosed that it did in the United states, United kingdom, you know, we can do better.
We absolutely can do better on getting women diagnosed as quickly as possible. So now let's move to an update on the study. Could you summarize where you and the team are with data collection? Looking at where we're at with the everywoman study, the lower middle income edition.
We're in the midst of data collection as we speak. So we have 24 countries involved. Not everybody is collecting data yet, at least not online. But we're hopeful that most will get through to that point fairly quickly now and.
On our data capture system. We have over 800 entries already of women's survey responses. And we in some countries they are collecting on paper and uploading afterwards. So we're really going to try and achieve at least 1,500 women, which is what we achieved before and ideally go a bit higher as well.
And so that we've got a really robust data set going forward and our data collection is due to carry on until the end of June. But we are already extending the deadline in some countries where they've had the most challenging times getting things going. You know, it's been quite a learning experience and for a whole variety of reasons it can take time to get things off the ground, and particularly for those in the lowest resource settings. It's really important we give them every chance to participate.
So we have countries spread across the whole globe and split between low, lower, middle, and upper middle income countries. So it's a really, really diverse mix. So I know that you've experienced a number of barriers so far. Obviously, this is to be expected with this study, this large and diverse.
It would be great to hear more about these challenges. Some of the challenges we faced, I suppose, is to be expected. You know, you're talking countries that are low income, lower middle, upper middle income countries. They themselves are quite diverse in terms of infrastructure, health, infrastructure.
And how commonly these teams are used to working together within a country or internationally can impact. You know, we've got, for example, 12 hospitals in Nigeria who are participating. They have a national gynecological Oncology Society. And this is the first big collaborative project that they've done that contrast very starkly with, say, in zambia, where we have the cancer diseases hospital.
So it's just one hospital. And the people who are leading the study. There are also treating women with breast cancer and people with bowel cancer. And so on.
So it's very diverse in who is involved and what experience they have and working within a country team, within an international team. There are differences in approach to ethics approvals in different countries. And we've had different hurdles to overcome, different time frames. We've had ethics committees abandoned, we've had some wanting large fees to participate, others demanding that the patients are paid because that's what's normal in their country.
Whereas in other countries that's a real number no. So all of these things we've had to work through with our Oversight Committee in a really sort of pragmatic way to try and make sure we can enable the country teams to participate. So those are some of the structural issues, if you like, of mentioned workloads as well. But we've also had, you know, the impact of the pandemic.
We've had clinicians who've been ill. We've had one of our country leaders had to go into hiding with her family because there were a lot of local kidnappings of nurses and doctors and young children in her area. And we've had people who've ended up emigrating from that country. So there's a lot of challenges to doing a project on such a scale in this country.
And, you know, it also takes time for us to build a rapport with a country team and for us to learn from them and for them to understand where we're coming from. So, you know, we've in some cases met with members of the ethics committee in that country and to try and sort of encourage movement forward so that we can find a sort of common ground. So it's been quite a challenge, really, but I suppose in a sense it's nothing really in comparison with the challenges that some of the women face. Um, you know, this study will only address the experiences of women who make it as far as a diagnosis and treatment.
We don't allow the survey to be carried out on the day, somebody is given a diagnosis. So these are women who have come back for surgery, for chemotherapy, for follow up. And I think it's important to realize in many of these countries where diagnostic tests may not be free treatment, certainly may not be free, that actually many women never make it that so. Or even if they get diagnosed, they can't afford to go and get treatment, so they drop out of the system.
So those are some of the challenges, very real challenges that are being faced as we go forward. You've had you have some really illuminating anecdotes and you have some really illuminating anecdotes of the challenges that those in developing countries have to face accessing care. Could you share some of these? Yes I mean, these are the real stories that sort of get to you and stay with you.
I think in a study like this and. You know, for example, I'm thinking of a lady in Nepal who we found we found some of these stories through actually through interviews with our country leads. And our country lead in the polls showed with this story of a youngish woman who was diagnosed with ovarian cancer and she came for surgery to his center. Now, it was 500 miles from her home to that center, and it took 18 hours in an ambulance that she and her family had to pay for.
And she received the surgery, which didn't cost her anything. And then she went home to recuperate and the team were trying to encourage her to come back and they kept in contact with her. But the woman and her family couldn't afford to raise the money to come back. So it wasn't about the cost of the treatment.
It was about actually getting to the hospital. And there are the stories are Nigerian lead her shared with us for example and our Kenyan Lead Stories of women who have come and got a diagnosis but then have said, well, I can't afford treatment now. I'm going to have to go back home, you know, perhaps a day's travel away or so and wait till I can sell some land or wait till I get money in from the harvest before I can afford treatment. Stories of women being abandoned by their partners in quite a lot of these countries where there is some health insurance is often through the husband and a woman having come and she had surgery and she had one round of chemotherapy.
And then her husband abandoned her and dropped her from his medical insurance. So she couldn't afford any more treatment. In the end, her brother stepped in and not returned to his insurance. But you have to build up the contributions for three months.
So there there were delays, of course, a lot of months waiting for her to be able to start treatment. All of these factors are getting in the way of women getting good care. And they really are things that we sort of need to take into account when countries look at what the issues are in their particular country. I mean, I've just been sitting looking at the data for our Kenyan team because they've not finished collecting their data.
And it was quite extraordinary. I was looking at the reasons for delays in diagnosis. And, you know, it's things like delays to lab tests and these things can be fixed. Some things are more hard.
But it's really important to get a picture in a country of what those particular issues are and think about how those might be tackled, you know, over and above things like free access to diagnostics, free access to treatment that can help women, but the context in which they're living. So the cultural context and the socioeconomic context, that geographic context, the fact that women are all really important, I'll go now and lead, for example, and where he works, his particular hospital and the rural settings, there's a lot of reliance on shamans and alternative health practitioners. So he
actually reported to us that 70%, 70% of the women attending his clinic have some form of skulls on the abdomen where healers have tried to let out the bad spirits. And this is all going on before they ever get to the hospital and to be seen by a medic. And so, you know, there are many, many barriers, but they are different and they're different in different countries. So trying to work around them and trying to think about how some of those barriers could be addressed as well as they note.
And issues around access to drugs and to treatments are really important. The treatments for ovarian cancer, the basic treatments, the core treatments that we all know and understand, they are on the WHO list of essential medicines, so they should be available in every country. We know they are not, but they should be. And we want women to be able to access them, but also to be able to access them without, you know, horrendous impact on their finances.
Again, looking at the Kenyan data this morning, something like 90% say that their family finances have been absolutely it's been catastrophic. And because of that, they've had to pay for treatment, they've had to pay for diagnostics and so on. So these are real issues and they really do prevent women getting the care that they need. Can I just pause for a minute, hannah?
Yeah, sure. I've just. My other half has arrived with the dog, and so I told him I'd be done by 11. But do you want me to be a bit more succinct with that, or is there.
No, that's fine. We can always adjust a little bit. And I think there's just great material here for, you know, we could also, you know, do promotion around it, pulling out some of these stories. Well, perhaps I could ask and there was a wonderful anecdote about Mozambique.
Not wonderful. It wasn't wonderful. It was bad. Sorry those it was. What about doctors going into hiding?
Oh, no, that means Nigeria. Can you or Nigeria. Sorry, it was Nigeria. So I did mention that.
So I did mention that maybe I was just listening out with my family and just let him be. And are you going to go? Yeah OK. Just let me bring this.
Sorry I'm just getting on. Yeah OK. And yeah, so she'd gone into hiding because kidnappings. Um, so I mentioned, I did mention that.
I think, I think it must be mystics. I was listening out for Mozambique. All right. Did you elaborate on it a lot?
I did. I did say because I said they were she had gone into hiding because there were lots of kidnaps of nurses and doctors and young children. Oh, Yeah. Yeah sorry.
OK so I thought it was a little bit just going to be more political and maybe political. Yeah OK. Yeah, I remember. Yeah OK, great.
So let's move on to the next question. So what has been, in your view, the biggest success of the study. So far? I think there are a couple of big successes really so far.
One has been seeing teams come together sometimes for the first time. In their country. They're working on a project together like this. And it seems to have found a flame, if you like, and an enthusiasm.
And many people are saying this is just the start of work that they're going to do. It also, I think has identified some real. Future leaders who are really committed to looking after women with ovarian cancer, to really understanding what is important for women and how that matters for them. So that they can give them the best possible care.
It's amazing to see, you know, they the care and attention and the thought that some of these leads are putting into how they can improve things for the women in their care. They really do feel ovarian cancer is underserved and is a forgotten cancer, if you like, with the focus being mainly on cervical cancer in their country or breast cancer. So they're really, really committed to seeing things change going forward. And I think that is really promising.
We've also seen some tangible outcomes as well. For example, there is now ovarian cancer Malaysia set up by patients involved in the study and the country team, which is amazing. They run events that are spreading awareness that providing peer support. They're contributing to research studies.
And we're seeing the establishment of a survivorship group in Kenya now as a direct result of the study. And for a number of hospitals, we're seeing the first ever information on ovarian cancer being developed. So those already, even without the results that data results off are going to be quite special, really, I think. One thing that struck me when we were having a conversation before this interview started is the difference between cultures really fascinating, and they naturally have an impact on how care's managed across the world.
You must have seen many examples of these contrasts. Absolutely I mean, even from our original study and with interviews with Japanese women who were very much about needed to get on with life, they needed to put the cancer behind them and put on a mask, if you like, of being OK when actually really they weren't OK behind. That was one aspect that really struck me from the first study. Attitudes about health, seeking behavior very, very differently and between countries.
And, you know, for some, if something's wrong, you go to the doctor. And in other countries, there are many barriers that get in the way. And also things like the role of religion and family. And I think that's one of the things certainly on Malaysian team have been really struck by.
I mean, they're Malaysian. They work in Malaysia. They know about the culture of Malaysia. They know about the religions in Malaysia.
But seeing how it impacted on and on, the women was really positive, actually. And women found a lot of support and help within their religious communities and amongst their family. But what it also taught that clinical team was that they needed to keep an eye out for women who didn't have that around them. Because those women were very much alone.
They didn't have that sort of system of support around them. So it's helping the clinical teams actually really understand what is going on as well as us looking at it from a global picture. Francis, Thank you so much for joining me today. It's been really great hearing about the everywoman studies progress and all of these really fascinating anecdotes and stories and cultural stories.
Before we wrap up, sorry, can you read me, and I'll read you that I'm just going to the My co-host is gone. So the dogs come a bit. Right he should settle down. In I'll put you on mute while you do the questions.
You've got a clean question, at least. Sure Thank you, Francis, so much for joining me today. It's been really great hearing about the everywoman studies progress and all of these fascinating cultural stories and anecdotes. Now, before we wrap up, could you tell us what's coming up this year, results wise, and where listeners can find out more information?
Well, it will take us quite a while to get through the results, and we will still be collecting data probably until the end of September into October, but you'll start to begin to see all the little snippets emerge. And we're already preparing some papers. We're analyzing the country interview the country lead interviews are great. Swathes of material really will start to emerge next year in 2024 and we are aiming for quite a lot of publications and we are actively encouraging all the country teams to be publishing a country level as well, and we hope to really do a big launch of the results we will have published before then in September and October time at some key events, at conferences.
But in the meantime, there is information on the world brain Cancer Coalition website, which is w world ovarian Cancer Coalition. Dot org making sure I get that right and you'll see snippets as well on our social media platforms and especially around World of our own Cancer Day. Another tagline as usual is no woman left behind, which is really important motivating force for us really at the coalition and yeah, through social media in the meantime and on our website. Thank you so much, Francis.
Great so I'm just going to stop for.
Struggles and Perseverance: A Glimpse into Ovarian Cancer Care in Developing Countries