RHDpodcastrial2

Rheumatic heart disease is a condition that affects the heart valves and is common in poor parts of the world. Late diagnosis is common due to symptoms overlapping with other conditions. Pregnancy can worsen the disease. It is caused by a bacteria and can be prevented with penicillin injections. Irish doctors are working with Malawi to improve the management of chronic diseases, including rheumatic heart disease. The partnership focuses on training and capacity building. A clinic has been set up in Malawi to diagnose and treat the disease, although heart surgery is not possible there. Early detection and treatment with penicillin are important in preventing complications. Access to medication in Malawi can be challenging. My name is Joe Callagher. I'm a GP in Goree in County Wexford, but today I'm here in Missousa in Northern Malawi with Hastings Conway at Kenneth Alston St. John's Hospital. He's talking with Esther, a 26-year-old woman who almost died during a recent pregnancy. Esther has rheumatic heart disease. This condition, once very common and more wild, has almost disappeared in Ireland. However, it remains very common in the poorest parts of the world. It is thought that there are more than 33 million cases of rheumatic heart disease worldwide, causing almost 320,000 deaths each year. The disease starts during childhood, affecting the very young and causing progressive symptoms. In those who die, the average age of death is only 27 years of age. Rheumatic heart disease affects the valves in the heart, causing them to leak or stiffen. This ultimately affects the function of the heart, causing it to fail. Esther's heart was so badly affected that fluid had built up in her lungs, and Hastings had to insert a drain into her chest to drain the fluid, something Esther describes as the fluid being tapped. Rheumatic heart disease can be hard to diagnose. Even when severe, as someone presents at the hospital, the symptoms overlap with conditions such as pneumonia or TB, which are also very common in young people in countries such as Malawi. In many others, the symptoms develop over a number of years and can be gradual and onset. Children and young people often adapt their lives to the symptoms. Children can pay less, or young adults can stop working to manage the symptoms. This means people can wait a long time to be diagnosed, further worsening their condition. And by then I wasn't even able to make a decision to come to the hospital. The decision was made with my Italian school, I wasn't well, so they brought me to the hospital so that I can be treated. Then it was after I visited several hospitals, but there wasn't much improvement. What did other hospitals think initially? Okay, they were suggesting that I had TB, and on the same I was even treated with the TB treatment, which didn't change anything. I was on the treatment for about three to four months without any improvement. Up to the time I visited. Rheumatic heart disease is a condition that defers over years, but it can worsen dramatically if extra strain is put in the heart. One of the reasons for the sudden worsening of rheumatic heart disease is pregnancy, because the extra fluid in the body, and the heart working hard to pump that extra fluid, puts it under increased pressure. Sometimes it's the first time that rheumatic heart disease is diagnosed, and this is what happened to Esther. Okay, it was diagnosed during my second pregnancy, but I think the problem was there even before, because during the first pregnancy I could have some challenges, some symptoms, but they were not that much, and I delivered safely. But during the second pregnancy, the time I was seven months old, that's when the problem occurred now, and it was severe. Yeah, by the grace of God, I delivered. That was two months down the line, since I became sick. But after delivery, that's now when it took more time for me to recover. Late diagnosis is all too common, and makes it difficult for Hastings to manage the condition. He outlined some of the reasons why this occurs. No, that's one of the greatest challenges that we're facing, because mostly the diagnosis is made late, so this could be due to a number of reasons. Yeah, the report late to the hospital. Sometimes it's not the fault of the patients, but because of the knowledge gap that is there, they might report to the hospital maybe a number of times with chest pains, cough, fever, and mostly people think of malaria and pneumonia. Yeah, so it tends to be missed a lot, and then when they meet someone who has got maybe knowledge about that, the diagnosis is made late, and this makes the management very difficult as well, because most of them, they would have already developed a complication. Yeah. So what is rheumatic heart disease, and what causes it? Rheumatic heart disease is a condition caused by the bacteria group A streptococcus. That's the same bacteria that causes strep throat in you and me. Although in Ireland, this gets treated quickly, in Malawi, where access to healthcare is limited, children can get a reaction to the bacteria. We still don't know why, but for some reason, the body thinks the tissue in the heart valves is like bacteria, and so as well as attacking the bacteria, it attacks the heart valves. This leads to inflammation and damage to the heart valves. This episode is called acute rheumatic fever, because joints often get swollen also. Children often aren't brought to get medical care, because this condition improves itself over a week or two, but every attack damages the heart valves some more. Ultimately, they get permanently damaged, and this is rheumatic heart disease, where the valves cannot be repaired. Over time, this damage can make it hard for the heart to pump blood properly, leading to symptoms like shortness of breath and fatigue. Acute rheumatic fever and rheumatic heart disease mostly affect children and young adults in places where streptococcal throat infections are common and access to healthcare is limited. This condition was once very common in Ireland, and Irish doctors were very important in its management. In 1869, William Stokes, a famous Irish doctor, pointed out that the severity of rheumatic fever in Dublin had declined in recent decades. This reduction, which arose before antibiotics were discovered, highlights the importance of things such as proper sanitation and hygiene in eradicating this condition. Robert Collis was an Irish paediatrician, and he confirmed in 1931 that group-based streptococcus was the bacteria associated with rheumatic fever. Ironically, Robert Collis himself had rheumatic fever. Today, the main treatment to prevent rheumatic heart disease is to give an injection of penicillin monthly. This helps prevent someone getting another infection with group-based streptococcus. This use of penicillin, given to prevent further episodes of rheumatic fever, arose from the work of an Irish GP practicing in West Cork. More than 70 years later, penicillin prophylaxis remains our standard of care. Dr. P.J. Burke undertook the first controlled study in 1947 and published his findings in the prestigious medical journal, The Lancet. He reported on a series of 20 patients with rheumatic fever and divided them into two groups. One he treated with penicillin, the other was not treated. This showed that treatment with penicillin reduced recurrent rheumatic fever. You might wonder, how did a group of Irish GPs, nurses, and pharmacists end up working with people in Malawi around rheumatic heart disease? Peter Harrington from the PANS GP Surgery tells us more. The Goree-Malawi Health Partnership links the PANS GP Surgery in Goree, in Ireland, with St. John's Hospital in Mizuzu, in Northern Malawi. And we've been working together since 2016 on improving the management of chronic diseases such as asthma and high blood pressure. Although we often think of these conditions as those affecting only wealthier countries, in countries such as Malawi, someone is four times more likely to die from a chronic disease between the ages of 30 and 70 compared to Ireland. Doctors are rare in Malawi. Malawi has a population of 22 million people and only has 625 doctors. Compare that to Ireland, which has 5 million people but 17,800 doctors. So we work with clinical officers, nurses, and pharmacy technicians and community health workers, focusing on simple interventions that can have a big impact. For instance, we started working on asthma, and by using a simple change to using inhalers, we were able to reduce hospital admissions for asthma by 65%. Then we focused on blood pressure, and working with Professor Mark Edwards, a pharmacist, we were able to develop a simpler and more cost-effective blood pressure medication protocol, which led to significant reductions in blood pressure, reducing heart attacks and stroke. But as the clinic grew, we were seeing young people coming with advanced heart disease, and it soon became apparent that this was rheumatic heart disease, something we just don't see anymore in Ireland. So we started to focus on this. Our partnership focuses on capacity building and training, so that people like Hastings Gonway, the clinical officer in St. John's, can provide care in a sustainable way, and it really makes a big difference. Together with St. John's Hospital, we set up a clinic for rheumatic heart disease. I'm Hastings Gonway. I'm a clinical officer working at St. John's Hospital. I'm also a clinical fair and clinical communicator for diseases at St. John's. That is in partnership with Ireland. We call it Gordie Malawi Health Partnership. Okay, yeah. We have a rheumatic heart disease clinic in St. John's. So basically, what we do is, any child that comes with fever, we rule out malaria. So if the malaria test comes negative, we probe more. We ask more questions, okay? Like, any histo-suffering, any histo-sufferant. We also screen about acute rheumatic fever. So we ask questions if maybe the child has issues like poliathritis, maybe chest pain, a cough. Yep. So those are some of the questions that we ask. Now, if there is a yeast on one of these questions, we do a cardiac echo, looking for mitral valve functionality. If the mitral valve has some abnormalities, for example, there is regurgitation of blood, we make a diagnosis of rheumatic heart disease, and then we start someone on treatment. Yeah. Treatment for rheumatic heart disease normally involves heart surgery, but that's just not possible in Malawi. Early detection and early treatment of penicillin can prevent complications. In Malawi, even access to cheap medications, such as penicillin, can be difficult. That's another greatest challenge, because the availability of medication is so erratic. Yeah, yeah. Sometimes they come, we don't have the medication, and then maybe we tell them to go and buy. They bring the medication so that we can inject them. So it's kind of tricky. Sometimes we tell them to go and buy, they don't come back. Yeah, so we will have lost that patient. Treatment can have a dramatic effect on people's symptoms and quality of life, as Esther outlines. So since you started taking an injection monthly? Yes, it improved. After a few months, it improved. Then the condition which I was having, like the pleural effusion, it went. That was in a few months, it went. But some fluzmide maybe that you were taking? Yes, I was also giving fluzmide. I started seeing some changes. And since then, I can say, of course it took time for the pain to go completely, from the stage where they were taking water from, the fluid from. It took some time, but for now. Awareness of rheumatic heart disease in the community is low, and so education is important, so that community members and children know when to come for treatment. And also for those who've been diagnosed, the importance of coming regularly for injections, even if they don't have symptoms. Hastings talks about the education programs they're running from St. John's Hospital. Yeah, it has, and it is still playing a very great role, in the sense that, you know, we tell people in the community, like the signs and symptoms of sore throat, and the signs and symptoms of acute rheumatic fever, and the signs and symptoms of rheumatic heart disease. So, since they have known that, okay, if I feel this, this is sore throat, and if it's left untreated, it will complicate to acute rheumatic fever, of which if it's not treated, it will complicate to rheumatic heart disease, and then it might complicate to heart failure. So, after knowing the signs and symptoms, a good number is reporting to the hospital area, like for us at St. John's, we have witnessed that, because of the work that we're doing in the community. So, once they have a sore throat, they come earlier to the hospital, we give them a proper management, like they have a sore throat, a child has a sore throat, we give them amoxicillin for 10 days, and we stress on that, that they have to be on this medication for 10 days, whether they feel well or not feeling well, but they still have to continue and finish the medication, and then they come for review. So, we feel like it's playing a very important role in the community, as far as error detection is concerned, and the propensation of treatment. In Malawi, studies estimate that 1 in 30 children is likely to have some degree of rheumatic heart disease. Early detection of it can ensure earlier treatment and prevent complications. Together, we also travel to schools to screen children for this condition, so it can be detected early, and they can start some treatment before they become sick. You need to wash your hands frequently. There are so many times, for instance, when we need to wash our hands. I know you have food here, we want you to eat it. And you also go to schools as well? Yes, we go to schools, like we've been to Masasa Primary School within Mzuzu, and we also have been to Mkantila Primary School, and the yield has been high in Mkantila Primary School, because so far we've diagnosed three cases from Mkantila Primary School that we have studied them on benzodiazepine penicillin monthly. Treatment to prevent further attacks of acute rheumatic fever means a monthly injection for children until they are 25 years of age. It's very painful due to the volume injected, and it can be hard to get children to come back to the clinic for them every month. It means a lot of time needs to be spent to explain to children and their parents why these injections are important. First, you know, an injection is always scary, but after proper counselling to their parents, they adhere, they come back. Alternate technology has a role to play also. Malawi has an excellent mobile phone network, and this combined with new technologies means that Haitians can do cardiac echocardiography or an ultrasound of the heart using a device called a Butterfly IQ. This device connects into a mobile phone and allows Haitians to see the heart and heart valves even when visiting the school or in a person's home, and even transmit the images back to Ireland to discuss the cases. Yes, you see the whole heart with all the chambers, all the heart valves, and then see the squeezing ability of the left ventricle. You check if there is pericardial effusion. You look and tell if the valves are functioning. Yes, so if there is any sickness of the IVS or something. Yes, so it's a very helpful machine. And without that, would you be able to diagnose rheumatic heart disease? Very, very hard. I think it's almost impossible. Yes, without that machine it's almost impossible to diagnose rheumatic heart disease. Because rheumatic heart disease is not a clinical diagnosis. You need to do a cardiac echo. Yes, sure. If you do an echo, you get so much better. Working together with the Universities of East Estonia, University College Dublin and Trinity College Dublin, we are now training clinical officers and pharmacy technicians in better ways to manage chronic diseases such as rheumatic heart disease. This would mean that people even in remote and rural areas would be better able to access healthcare. One of the problems in Malawi is that there is no social welfare system. So if you cannot work, your family must look after you. This is a big problem for Esther, but treatment has improved her symptoms enough for her to return to work. Well on that. By then I was limited in terms of my work. The job that I could do at work, even my bosses could know that Esther cannot do this, cannot do this, just because she's sick. But by the time they saw me that I'm hit again, my boss then even called me, addressing me that now we see that you are at risk here. You are good. You can do everything. This is some of the duties that you are supposed to resume, which if you think you were not able to do them by the time you were sick. But more importantly, rheumatic heart disease robs children and young adults of their future. Some die. Even those who live with this condition cannot attend school or work due to being sick or play with their friends. Having a baby risks their life. Cheap medications can change all of that. A lot has changed. And a lot has happened. Positive ones. Yeah. Because by then, as you have already said, that I was at, later I went to school. I did my degree. But by then I lost hope. I thought I couldn't make it. Even the opportunities I was being given about doing school, I was turning them down. I thought I couldn't make it again. I lost hope in everything. I was doing business. By then my business collapsed. By then I had a newborn baby. I wasn't even able to take care of my child because I was also needing a care from the guardian. So I had a very young baby and myself looking for a guardian. But now I can take care of my child. And on top of that, I conceived again after that time. I now have a baby again. My baby now, my newborn baby is four months old, first month old now. During this pregnancy, this, the current baby, I didn't face any current, I can say, compared to the, my second born baby I was born during the time of the people. But this time everything went well. I have three children but through the experience, the sickness, the sanitarium, the state born, was the best. And as in other parts of the world, a new child brings great joy as the community celebrates a new arrival. Working together, both feet on Essex Child goes up to the Mata Carthi, who is part of History of Malawi. Just as in Ireland, it is only of historical interest today. you