RCP - Pediatric Cardiology Network
Secretaria de Estado Saúde

A. Problem Analysis

 1. What was the problem before the implementation of the initiative?
Caring for children with heart defects remains a challenge worldwide. In developing countries, diagnoses are often late due to the lack of screening programmes and trained personnel. The problem is worsened by limited availability of hospital beds and the remoteness of rural communities from main urban centres where paediatric cardiology specialists are available. Brazil faces these challenges, particularly in its poorest areas, the north and north-east parts of the country. The State of Paraíba, located in north-east Brazil, has 3.7 million inhabitants. Around 70% of the children are cared for by the public health system; many live in rural areas and most come from very poor backgrounds. As there were no established paediatric cardiology facilities in Paraíba, children had to be referred outside the state for diagnosis and treatment. One of the main referral centres is in the city of Recife, in the neighbouring state, Pernambuco. Children were referred from towns and villages as far as 310 miles from Recife; many arrived after a long time on a waiting list, with consequent deterioration of their clinical condition and some children died before being seen by the specialist. Morbidity and mortality rates from cardiac conditions, in children, were so elevated in Paraíba that the press would often refer to being born with a congenital heart defect as “entering a death row”. In 2009, the Brazilian Institute of Geography and Statistics (IBGE) registered a total infant mortality rate for Brazil of 22.50, and of 33.22 for the Northeast Region and of 35.20 for the State of Paraíba. Early diagnosis and management of heart disease is the most important step towards overall recovery of patients. Roughly eight to 10 in every 1000 neonate presents with a congenital heart disease (CHD). Paraíba has close to 60.000 births per year, which amounts to approximately 500 to 600 new babies with CHD every year. Twenty to 30% of those will present with critical conditions requiring cardiac surgery during the first year of life. Others may require late intervention of clinical follow-up. Besides the ones with CHD, there are many other children presenting with acquired heart conditions such as the sequelae from Rheumatic Fever or Kawasaki’s disease as well as with the precursors of coronary heart disease, i.e. obesity, hypertension and insulin intolerance. Altogether the universe of heart disease in children is huge and frequently worsened by deficiencies in the public health sector. Key to this situation is the understanding that most children with heart conditions are born without compromise of other organs and, if adequately treated at an early age, can become fully integrated and contribute to family and society in later life. Delays in treatment, however, may lead to permanent damage of cardiopulmonary function and a lifetime dependency of the health systems and familial support.

B. Strategic Approach

 2. What was the solution?
1. To form a partnership with an NGO specialized in pediatric cardiology care from a neighbour State (The Heart CirCle – CirCor); 2. To develop a Network of Services from prevention to screening, diagnosis, clinical and surgical treatments and post-operative follow-up providing an integral line of care for underserved children from all areas in the State; 3. To mix high-technology, particularly Internet resources, with simple measures to establish a collaborative work among different professionals and centres, strongly focusing on the training of local professionals to assure the continuation and growth of the project/solution.

 3. How did the initiative solve the problem and improve people’s lives?
In October 2011, a partnership programme was established between the Health Secretary of Paraíba (SES-PB) and CirCor, a nongovernmental organization from Recife with the purpose of devising an innovative approach to structure the care for children with heart disease in Paraíba. The proposed work methodology was the CirCor’s LEGOS (Lead by Empowering Groups to Optimize Solutions) and thus, the very first stage of the Program was the analysis of situation to definition of Program’s priorities and strategies. As in Brazil, especially in the North and Northeast, there are scanty data on actual congenital heart disease rates, a retrospective study was conducted. It was based on institutional data drawn from the Collaborative Latin American Study of Congenital Malformations (ECLAMC) compiled between January 2001 and December 2011 and included 70,857 consecutive births, from which, 290 diagnoses of CHD were reported, with defect types established for 232 of them: 37.8% left-to-right shunt lesions, 9.1% acyanotic obstructive lesions, 5.6% cyanotic obstructive and 10.3% complex congenital heart diseases. Heart defects were an isolated finding in 81% of cases. The CHD rate in this series was well below that reported in the literature probably reflecting difficulties in establishing early diagnosis. And as this is key to the whole structure of paediatric cardiology services, it became, therefore, the initial priority of the Network. To achieve this goal, we proposed to mix telemedicine technologies with live actions to establish an integral line of care from screening to cardiac surgery and post-operative follow-up for children with heart disease in the State. Simple, low cost but robust, technology strategies were always preferred providing it did not hinder the quality of services. Indeed, although there was a preference for a low cost technological strategy the material used was always of high quality assuring optimal long term use of technology resources. Initially, the 12 largest public maternity centres in the state were selected, together with one paediatric hospital. Centres were divided into three levels (designated I to III). All centres received tablet computers and pulse oximeters (level I); three maternity units also received a portable echocardiography machine (level II) and the paediatric hospital in the capital city of Paraíba State was equipped as a cardiology centre (level III). Training took place at all levels of the Network following a pattern of initial live sessions followed by complementary sessions via telemedicine. Teleconference software was acquired and a database system and website were developed (https://www.circulodocoracao.com.br/sites/circor/en). Three online weekly clinics were established in the three largest participating sites. Their purpose was to allow local paediatricians to examine children with heart defects with guidance from paediatric cardiologists, via the Internet. These sessions aimed to reduce travel costs and provide a closer follow-up of children by the network. A cardiology team was on-call 24 hours per day to supervise all network activities. The initial team consisted of 7 cardiologists, 3 residents and 4 staff (located in Recife). Three were specialized in paediatric echocardiography. The cardiology team performed daily rounds in all neonatal units from the participating sites, maintained intensive care unit supervision and organized teaching sessions, clinical and surgical meetings. A new perinatology team (with 13 neonatologists) joined the Network in 2014 when the Network expanded to 22 centres. The perinatology team was mostly involved in teaching and seeing patients within the maternity centres. From August 2015, 12 new virtual clinics were established in remote sites.

C. Execution and Implementation

 4. In which ways is the initiative creative and innovative?
The LEGOS methodology, rather than focusing on a pre-set solution or goal, aims to attain different results, based on each group's expectations and abilities. It is plastic and more dynamic than conventional approaches thus leading to better interaction between team members. Examples of its creativity and innovation are: 1. ECO TAXI: an itinerary delivery of three sets of cardiac equipment providing 12 new out-reach clinics every month. The idea is to make the technology come to the patient instead of otherwise; 2. HEART CARAVAN: an active search for older children occurring once a year in 13 of the most remote sites. Most of the team members, staff included, travel together to each one of these cities to train local health professionals and deliver care and information to families and other community members. Subsequently, these patients are followed at the virtual outpatient clinics; 3. PERINATOLOGY network: a spin-off from the cardiology network focusing on training health professionals to care for mothers and babies; 4. MICROCEPHALY task-forces: the use of Network resources to identify and care for children with microcephaly in the State; 5. MUSIC TEACHING PROGRAM: an innovative way of teaching health habits, with focus on prevention, for children and adults.

 5. Who implemented the initiative and what is the size of the population affected by this initiative?
The initiative of changing the reality for children with heart disease in Paraíba came from the State Government. To achieve this goal, a partnership was established with the non-governmental organization CirCor. Initially, CirCor, the technical partner was responsible to devise a work plan and present to the Health Secretary for approval and funding. After approval, CirCor implemented the Program under supervision of the Health Secretary. The Health Secretary audits the Program every three months and larger audit processes take place once a year involving other State organs such as the state’s General Auditing Department (CGU). The original Program was designed for a six-year period divided into three equal parts of two years for establishment, conduction and technology transferral. And the objective was to structure the care for children with heart problems in the State. In its first version, 13 sites were included (12 maternity centres and a paediatric Hospital) to cover approximately 60% of births in the public health system and to establish diagnostic, treatment and follow-up facilities for neonates and older children. It reached its goals and was expanded, after the second year to 22 participant sites aiming to reach 90% of public health births, and expanded its training to include perinatology. And due to the LEGOS plasticity, many point-of-care and on-going spin-off actions developed over the years, such as Heart Caravans, Heart Rooms, Echo-Taxis. In 2015, besides the routine activities, the Network undertook the task of evaluating, retrospectively the head circumference of babies born in Paraíba since 2012. In one month, nurses from participating sites retrieved this information from 16.208 birth records. Since then, out-patient clinics are being adjusted to care for children with suspected or confirmed microcephaly, as well.
 6. How was the strategy implemented and what resources were mobilized?
Financial Resources All resources come from State funds. The first two years had a yearly budget of US$ 1.200.000,00. In 2014, with the increase in number of centres (from 13 to 23) and expansion to perinatology services, this was adjusted to US$ 2.000.000,00/year. These resources cover the equipment acquisition, clinical and surgical services, database and website development, training and every other aspect. Implementation CirCor is the NGO responsible for Networks design, methodology, service implementation, monitoring and adjustments. In the start of each new period of the Network, plans are presented to State officials. Once approved, CirCor executes the plans under trimestral monitoring of the Program's progress. Protocol development Four initial protocols were developed: (i) a training protocol, to explain the use of all equipment and software; (ii) a focused clinical examination protocol, to remind clinicians about the details of neonatal cardiology examination before discharge; (iii) a protocol for pulse oximetry testing of all babies born after 34-weeks’ gestation, based on guidelines published at the time; and (iv) a screening echocardiogram protocol for neonatologists, which included three two-dimensional anatomical views and colour flow Doppler imaging. Members from all units were invited to participate in training sessions to learn and adhere to protocols. Each centre appointed three coordinators (one physician, one nurse and one computer support person) to report results and problems to the reference centre. The training protocol included an initial eight-hour course followed by online sessions for all team members. Many other protocols evolved with time, including post-operative guidelines, nutritional and psychological manuals, among others. Screening, diagnostic tests and management strategies Indications for screening echocardiograms were either an abnormal clinical examination or pulse oximetry, defined as an oxygen saturation ≤ 95% or a difference in saturation greater than 2% between the right hand and one foot. Abnormal pulse oximetry results were automatically noted on a database, allowing the Network to contact the clinic and request that they follow up any babies discharged home with abnormal test results. This active search protocol tracked over 80% (59 013/73 751) of the discharged neonates and ensured that abnormal findings were acted on. Echocardiograms were done by neonatologists under direct online supervision by paediatric cardiologists, or a video recording of the examination was stored and forwarded together with the neonatologist initial diagnostic impression. Paediatric cardiologists reviewed and reported on the videos, with advice on clinical management, within one day. Virtual outpatient sessions, ward rounds and other meetings were also scheduled to provide a full range of interactions between the health workers in rural areas and smaller municipalities in Paraíba and the paediatric cardiologists at the reference centre. Surgeons and anaesthetists from Recife agreed to travel to the paediatric hospital in João Pessoa, the capital city of Paraíba, once a week, to perform heart surgery. The more complex cases, however, were referred to Recife. Technical specifications Internet connections were unreliable for some health centres. To overcome this problem, tablet computers with third generation mobile wireless Internet connections were distributed to all centres. Webex teleconference software (WebEx Communications Inc., Milpitas, California) was acquired to provide secure communication over the Internet. Online meetings were held each day, among all centres, using existing tablets or laptop computers. Echocardiographic images were either directly acquired from the echocardiogram screens or stored and subsequently uploaded to the website. Human resources The Network has a small number of full-time members working, mostly, by optimizing local resources. That means working with public health employees from both state and municipality levels. In most cases, work hours from on-call shifts are transferred to hours in the Heart Rooms, but these negotiations vary from centres.

 7. Who were the stakeholders involved in the design of the initiative and in its implementation?
During the initial stages of Network, CirCor and SES-PB, as well as other health professionals, managers and academic institutions from various municipalities were involved. Meetings with some families also took place to discuss major needs and health care delivery. Three different groups are the main beneficiaries from this Program: health professionals, local health managers and patient/families. Nurses have been fundamental to the Program, by both providing the initial screening tests and organising the steps children may follow within the Network. Together with paediatricians, another key group of professionals, they are under continuous training, tailored to the specific needs and goals of each centre and responsible to spread the LEGOS technology and work methodology to other local professionals thus increasing awareness and standards of care. Local health managers also largely benefit from the Program because serious worries, such as patient transferral to specialized centres, are no longer falling into their offices. At the same time, they benefit from much more accurate health information, new technology and Network integration based on which they can do planning. However, overcoming political views and understanding and supporting the Network as a technical Program is a continuous challenge. Finally, the population that uses the Unified Public Health System (SUS) in the State and who lives in remote sites are the key beneficiaries of the Program. They now have quick access to state of the art technology through their local health system. And once screened and diagnosed the Network structure assures that they remain seen regularly and get referred to the required consultations, diagnostic tests and management processes, as needed. This working partnership’s main impact is that it overcomes the shortage of specialized personnel in Paraíba. However, the few that exist or are in training are fully prepared to re-inforce the Network’s standard procedures for each situation.

 8. What were the most successful outputs and why was the initiative effective?
The Network has reached all its goals and surpassed some. Its 10 most successful outputs can be summarised as: 1. Putting into practice Public Health principles such as Universality, Equity and Regionalization by delivering paediatric cardiac services to all children born within the State of Paraíba conforming only to their medical needs, independent of place of birth, gender, or any other factor; 2. Mixing high-technology with simple measures to optimize the system to specific needs and abilities; 3. Orchestrating the work of public health professionals as well as other public servants to collaborate into an integral line of care, independent, for the most part, of political, religious or other personal positions. The emphasis was put on the welfare of patients and population in general; 4. Implement a screening protocol for congenital heart disease in neonates without the need for any legislation to reinforce that; 5. Establishing a paediatric cardiology service with surgical facilities and thus abolishing medical litigations and putting an end to "the death row" era; 6. Contributing to decrease infant mortality, particularly in the neonatal period; 7. Training over 1.500 professionals in screening for CHD and other medical and management areas; 8. Developing a database to store all data (including medical images) for paediatric cardiology; 9. Generating medical statistics, which not only helps understanding real public health problems but also fosters research into its cause and impact and can be used for the development of public health policies; 10. Demonstrating the plasticity of the LEGOS work-model which was able to respond to the needs of the population/health system to generate new programs, expand to accommodate perinatology services and to help facing the microcephaly outbreak. The effectiveness of the Network can be attested by its numbers. The following data refers to the period of January 2012 to December 2016: · 146.422 neonates screened · 10.786 older children screened · 2.014 foetuses screened · 3.739 screening echocardiogram tests with 1,951 congenital heart disease diagnosed in neonates (13.32 per 1000 live births) · 8.378 echocardiograms · 12.055 consultations · 532 paediatric cardiac operations · 289 courses/symposia with over 5.500 participants · Regular weekly meetings and two full (cardiology and perinatology) on-call teams online on 24/7 · No medical litigations over paediatric cardiology in the State for the whole period of the Network.

 9. What were the main obstacles encountered and how were they overcome?
The main obstacles that hinder the Network’s full operation and expansion are listed below: 1. Changing culture from live consultations to incorporate the use of technology and of online interaction started with the LEGOS methodology; 2. The use and compliance with Network’s protocols, particularly data input in the Network online database and website are time consuming and often overlooked by busy workers; 3. Change of nursing staff or other well trained network professionals due to hospital management changes, economical cuts or political changes; 4. Involving local paediatricians in the management of the new technology to run the virtual clinics and conduct patients under online cardiology supervision; 5. Poor Internet connection which often hinders the analysis of live transmission of echo images; 6. Occasional non-availability of transport to bring patients to larger centres when needed and even to get the Echo Taxi equipment for the virtual outpatient clinics; 7. Infrastructure to perform paediatric cardiac surgery which is still incipient allowing for coverage of only 30% or the required total numbers. This is the main challenge of the Network.

D. Impact and Sustainability

 10. What were the key benefits resulting from this initiative?
The benefits of this initiative can be grouped into medical, economical and psychosocial. Universal coverage: In the first year of the Program coverage was 65.5% of the target population (neonates with 34 or more weeks of gestational age in the participant centres) and 49.1 % of all births in the public health system in the State. This represented a coverage of 36.4% to births in Paraíba. In 2016 it reached 95.7% of the target population and 95.1% of all births in the public health system in the state, which accounts for 69.3% of all births in the State. Indeed, about 70% of the births in Paraíba are covered by the public health system and this finding not only confirms the Universal coverage of the Program but also highlights its importance because of the size of the population which was previously not cared for by paediatric cardiology and, in many ways, by other paediatric specialties. Infant mortality Infant mortality in Paraíba has been reducing gradually over the last 15 years. During 10 years before the Network it reduced 37.2% (22.85 in 2002 to 14.36 in 2011). During the first five years of the Network period (2012-2016) there was an additional reduction of 10.4 % (14.36 to 13.00) what could only reflect the previous tendency. However, the rate of neonatal mortality fall was much more striking during the five years of the Network when compared to the previous decade (29.4% between 2002-2011 and 18.0% between 2012-2016) pointing to an added effect from the neonatal screening program for congenital heart disease together with the perinatology training. Public health impact Besides the above-mentioned benefits, the establishment of the Network has produced a change of paradigm in the way health services are delivery for this population in Paraíba. Once started by the Network, the many available internet technologies have facilitated the communication among families, health professionals and management team. The Network uses the Cisco WebEx platform for its official meetings, due to patient data security, but among members, for non-confidential data, other software, such as skype or whatsapp, are often used. Being able to guide the management of a premature baby or the management of a critical blue baby in an outreach clinic while simultaneously organizing transportation and identifying a referral Unit to receive the baby, is one of the everyday examples of this work model. The major impact of all this is the speed through which information travels and actions take place within the Network. Hospital transferrals as well as hospitalization periods have been reduced. Children are being followed-up locally through the 32 outpatient sessions provided by the 15 sites (12 occur once a month and the other 5 occur once a week). Costs with transportation just for examinations and with complications for prolonged preoperative hospitalization periods have been reduced. A detailed study of the economic impact, including the impact of perinatology services, is being conducted and will be divulged shortly.

 11. Did the initiative improve integrity and/or accountability in public service? (If applicable)
The benefits of this initiative can be grouped into medical, economical and psychosocial. Universal coverage: In the first year of the Program coverage was 65.5% of the target population (neonates with 34 or more weeks of gestational age in the participant centres) and 49.1 % of all births in the public health system in the State. This represented a coverage of 36.4% to births in Paraíba. In 2016 it reached 95.7% of the target population and 95.1% of all births in the public health system in the state, which accounts for 69.3% of all births in the State. Indeed, about 70% of the births in Paraíba are covered by the public health system and this finding not only confirms the Universal coverage of the Program but also highlights its importance because of the size of the population which was previously not cared for by paediatric cardiology and, in many ways, by other paediatric specialties. Infant mortality Infant mortality in Paraíba has been reducing gradually over the last 15 years. During 10 years before the Network it reduced 37.2% (22.85 in 2002 to 14.36 in 2011). During the first five years of the Network period (2012-2016) there was an additional reduction of 10.4 % (14.36 to 13.00) what could only reflect the previous tendency. However, the rate of neonatal mortality fall was much more striking during the five years of the Network when compared to the previous decade (29.4% between 2002-2011 and 18.0% between 2012-2016) pointing to an added effect from the neonatal screening program for congenital heart disease together with the perinatology training. Public health impact Besides the above-mentioned benefits, the establishment of the Network has produced a change of paradigm in the way health services are delivery for this population in Paraíba. Once started by the Network, the many available internet technologies have facilitated the communication among families, health professionals and management team. The Network uses the Cisco WebEx platform for its official meetings, due to patient data security, but among members, for non-confidential data, other software, such as skype or whatsapp, are often used. Being able to guide the management of a premature baby or the management of a critical blue baby in an outreach clinic while simultaneously organizing transportation and identifying a referral Unit to receive the baby, is one of the everyday examples of this work model. The major impact of all this is the speed through which information travels and actions take place within the Network. Hospital transferrals as well as hospitalization periods have been reduced. Children are being followed-up locally through the 32 outpatient sessions provided by the 15 sites (12 occur once a month and the other 5 occur once a week). Costs with transportation just for examinations and with complications for prolonged preoperative hospitalization periods have been reduced. A detailed study of the economic impact, including the impact of perinatology services, is being conducted and will be divulged shortly.

 12. Were special measures put in place to ensure that the initiative benefits women and girls and improves the situation of the poorest and most vulnerable? (If applicable)
This Program focuses in maternal-child health for low-income populations. This, naturally, includes minority groups, such as young adolescent mothers among others. But the program aims to reach all low-income mothers and children from the State, independent of colour or gender. As the program is also focused in training and prevention we also observe more awareness in the population regarding not only cardiac but also other related problems. Social issues, such as access to medical care, different benefits and even the dynamics of health services are also object of discussion and receive contributions from Network members, local health professionals and the population. This a strong point in the use of LEGOS methodology. Many of these issues are dealt with through weekly multidisciplinary out-patient "virtual" clinics conducted by nurses, psychologists, nutritionists and social workers and referred to other State public health services when appropriate. The economics behind the program considers the welfare of the population and this directs not only the services provided but also the way these services are provided to the population. A good example of this is the use of the network for collecting and analysing data related to ZIKA and Microcephaly problems.

Contact Information

Institution Name:   Secretaria de Estado Saúde
Institution Type:   Government Department  
Contact Person:   Claudia Veras
Title:   Secretary of Health  
Telephone/ Fax:   +55 83 3218-5074
Institution's / Project's Website:  
E-mail:   premiogovpb@gmail.com  
Address:   Av. Dom Pedro II, n° 1.826 - Torre
Postal Code:   58.040-903
City:   João Pessoa
State/Province:   Paraíba
Country:  

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