RHEUMATIC HEART DISEASE CONTROL: WORKING TO KEEP BRAZILIAN CHILDREN HEALTHYIn Brazil, rheumatic heart disease (RHD) still kills or disables thousands of children and young adults. “Brazilian cardiologists and cardiac surgeons see the results of rheumatic fever regularly” said Dr Rui Ramos, of the Brazilian Heart Foundation. “It is all the more tragic when you know that it is a preventable disease that has been eliminated in many parts of the world.” “There are RHD control programmes in many different parts of the country and they collect information at local or even regional level. But the information-gathering is not coordinated enough for us to get a good grasp of the overall picture,” said Regina Müller of the National Institute of Cardiology in Rio de Janeiro. RHD is responsible for many of the over 10,000 valve surgeries that are performed in Brazil each year, and is a great hardship for both its victims and their families. A study published in 2002 quantified the high socioeconomic cost of RHD among the urban poor, and soon after that the institute launched the PREFERE programme (Programa de Prevençâo à Febre Reumática). “We decided to start in schools: the disease usually starts during school age, so that is the most logical place,” Dr Müller stated. Aiming to build a network for information, training and action to prevent rheumatic fever, the PREFERE project was piloted for 6 months in Niteroi, Rio de Janeiro. “We knew that just giving information is often not enough to change attitudes and behaviour” she continues, “and so we used an approach that let children and teachers come up with their own ideas on how to get the message across.” The project organized trainer training for 33 teachers in 30 primary schools; these teachers then went on to train 850 other schoolteachers, who in turn reached over 16,000 pupils in interactive projects including events, songs, and plays. Soon after the PREFERE project ended, the director of the Institute attended the 2006 World Congress of Cardiology in Barcelona. There she saw the demonstration of the World Heart Federation internet resource on RHD control (RHDnet). When she returned home she asked her team whether the databases on the site might work in Brazil. “We decided to try the World Heart Federation database because it is so simple,” said Dr Müller. “In Brazil we tend to make databases with a lot of information and then end up not having the time to fill them out. This is not practical, especially when there are so many cases of RHD to enter.” “It is also important that the database is easily available: we would like for it to be used widely so that we can pool data. Brazil is an enormous country and having the database free on the internet means we can share it with practitioners who are isolated and far away. We also considered that this easy accessibility would make it possible for others, like Portuguese-speaking countries in Africa, to benefit from our work. “So the team translated the database into Portuguese and adapted it, piloting the register in two hospitals in Rio de Janeiro. The pilot was successful and now they intend on introducing the database in 15 hospitals. “Even though they are all public hospitals in the same city, they belong to different administrative departments and have different information systems, so this complicates things” Dr Müller explained. A next step would be to do an in-depth pilot at the National Institute of Cardiology, where they can enter over 1,000 patients. Dr Müller and her colleagues hope that the Ministry of Health will adopt the database as a national reference – this would improve follow up of individual patients and make it possible to pool and compare data from different locations. “We are presenting the results in different meetings and trying to mobilize political will,” she adds. The institute and the cardiology society are hoping to collaborate to translate other resources on RHDnet into Portuguese. The institute has also conducted an observational study to investigate the mortality and morbidity of children and adolescents with RHD in a tertiary care centre in Rio de Janeiro. Examining charts of children who had been diagnosed and treated over about a decade, it found that about a quarter of the cases of rheumatic fever had not received regular penicillin shots needed to prevent its recurrence (secondary prophylaxis). Predictably, these were the cases with the highest rates of recurrence. It also investigated how healthcare practitioners understand and treat RHD, conducting a survey of over 400 Brazilian cardiologists at the annual Congress of Cardiology. A group of 110 primary care physicians attending a seminar on RHD were given the same survey. “We found that the two groups have different approaches: cardiologists diagnose mostly by laboratory results, while primary care physicians use clinical findings. We feel there is a need for consistency and have begun work with the Brazilian Cardiology Society to update national guidelines. These are scheduled to be launched in September at the next national Congress of Cardiology taking place in Salvador, Bahia. A neglected disease of poverty, rheumatic fever has nearly disappeared in wealthy populations. Globally, some 15 million people are estimated to be affected by the disease, and about 300,000 of them die from it each year. Most of these victims are children and young adults. The World Heart Federation is committed to contributing to the eradication of rheumatic heart disease and actively supports networks of professionals in the South Pacific and Africa. RHDnet, its unique online resource on RHD control, is a free platform designed to share their experiences and link health care professionals who work around the world to control RHD. Useful links | |||||||
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