Health-seeking behavior is a critical determinant of success for rheumatic heart disease (RHD) control programs. If people at risk of RHD do not seek care for group A streptococcal (GAS) infections, primary prevention is impossible. If they do not present with symptoms of acute rheumatic fever (ARF), the window of opportunity for successful secondary prevention closes. Similarly, people with RHD will not benefit from advanced medical or surgical management if they do not know that care is available, or are not fully aware of all aspects of their care. Therefore, awareness of disease is a prerequisite to accessing and benefitting from care.
Community and clinician awareness of RHD is low in almost all of the places where it has been explored. The protracted etiologic pathway of RHD and complex nomenclature are barriers to ready awareness. Equally, the autoimmune mechanism of ARF is not necessarily an intuitive concept in settings of low health literacy. In endemic settings with a high burden of RHD, access to formal education is low. For example, a small study in Iran reviewing 45 mothers whose children had been referred to local clinics for suspected pharyngitis showed that mother’s knowledge of ARF prevention was significantly associated with her educational history. Those with secondary school educational achievement had greater knowledge of ARF than those with primary school education, perhaps suggesting some exposure to this knowledge at different levels of education.
Sporadic surveys among community members in various locations have largely found low levels of knowledge and awareness of sore throat, ARF, and RHD. In a 2010 Tanzanian study, most doctors surveyed reported that patients and families had no awareness of the consequences of untreated GAS infection. This is supported by a study of 740 community members aged nine or above in the Kinondoni municipality in Tanzania, which found only 13% knew that sore throat is caused by an infection and only 14% were aware of the link between sore throat and ARF. Furthermore, recruited in this study were 540 primary healthcare workers, who demonstrated improved awareness of ARF/RHD of 60%–89%. In the Haryana State in India in 1992, very few school children had ever heard of ARF. In Kenya in 2008, 200 school children were surveyed about knowledge of sore throat, ARF and RHD before an education intervention. Baseline knowledge of the disease was poor. A larger study in Iran in 2008 surveyed 443 mothers attending clinic with their children for immunization or primary care. Two thirds of mothers had poor or moderate knowledge about the epidemiology of ARF and over 90% had poor knowledge of symptoms and complications. Similarly, in Samoa in 2011, 148 mothers surveyed about sore throat reported little knowledge about when to seek medical care. In Nepal in 2016, 2245 people were interviewed in primary healthcare clinics and asked 30 yes/no questions about GAS, ARF, and RHD. Although 75% of people knew what throat infection was, less than 2% were aware of the link between throat infection and ARF or RHD.
Although each of these studies used different designs and methodologies, and are therefore not directly comparable, results from different locations at different times generally support the idea of limited awareness of GAS infection, and in particular the link with ARF and RHD, within communities with a high burden of disease. In addition, many of these studies did not define the community members in detail nor the levels of healthcare workers, which does not allow for generalization or applicability to other contexts.
School teachers are another group in the community who may benefit from an awareness of sore throat, ARF, and RHD. Theoretical roles for teachers to support care delivery may include understanding the need for timely access to care for sore throat, knowledge of some of the key symptoms of ARF (such as arthritis or severe exertional dyspnea), or facilitating time away from school to access secondary prophylaxis injections. However, very little has been published on the topic of school teacher awareness and these limited reports suggest limited baseline awareness. In Zambia, 53 teachers (some also acting as school health officers) from 45 schools participated in an educational workshop on RHD. At baseline, 55% of the teachers had heard of RHD but only half were aware of the association with sore throat.
People and Families Living with Acute Rheumatic Fever and Rheumatic Heart Disease
People living with RHD could reasonably be expected to have a greater knowledge and understanding of the disease relative to the general population. However, qualitative research in a number of settings suggests that even people receiving treatment for the disease have limited knowledge, whether biomedical or based in belief systems, about the disease. In a study among Aboriginal people in a remote Australian setting, very few interviewees had a detailed understanding of RHD but agreed to secondary prophylaxis on the advice of trusted health practitioners. Similarly, in Jamaica, 39 people receiving secondary prophylaxis injections knew that they had RHD but had a poor biomedical understanding of causality. These individuals also relied on recommendations from health professionals to help make decisions about persevering with secondary prophylaxis. In South Africa, qualitative interviews of eight caregivers of children who had been diagnosed with ARF indicated that 6 of 8 did not know what caused ARF and 7 of 8 had not heard of the disease before diagnosis. In Cameroon, RHD patients attending an out-patient facility demonstrated little knowledge of RHD. The concept was unknown to 82% of the participants and 95% of them did not know what caused RHD. Only 5.1% of the participants had what the authors considered to be an adequate knowledge of RHD.
Limited community knowledge about sore throat, ARF, and RHD increases the need for health professionals to be able to provide high quality advice and education as well as clinical services. However, studies suggest that this knowledge is variable between settings. For example, in a survey of 395 primary care providers in Tanzania, 73% were aware of the association between sore throat and ARF. In Brazil, cardiologists’ awareness of primary prevention was limited. Among 242 Saudi Arabian emergency medicine physicians, only 67 (27%) adhered to guidelines for treating acute pharyngitis. In South Africa in 2005, a survey showed that many doctors were not aware of national guidelines for primary and secondary prevention of ARF despite guidelines having been available for nearly a decade.
Sudan demonstrated the ability to improve levels of awareness from poor to good with focused intervention and regular awareness and education programs for health workers. The study focused on 87 pediatric doctors, 25 (29%) of whom were registrars, 14 (16%) were medical officers, and 48 (55%) were house officers. The doctors’ awareness about the diagnosis of GAS pharyngitis was about 38%, which increased to 93% after lectures, as assessed by pre- and postquestionnaires. Intervention comprised of three lectures, manuals on primary and secondary prevention, teaching sessions, and practical workshops.
Policy Makers and Funders
GAS, ARF, and RHD have long been ignored by policy makers and funders in the fight against communicable and noncommunicable disease. Despite a burden, measured in DALYs, equivalent to breast cancer and leukemia, similar mortality numbers to rotavirus and about 50% of that of malaria, ARF, and RHD were reported in 2009 to have received only 0.07% of global funded toward research and development. Although there has been a resurgence in research and policy interest in GAS, ARF, and RHD recently, this has not translated into significant additional funding at community and policy level. Recently, a novel logarithmic disability neglect index (DNI), based on the Global Burden of Disease Study and funding from the G-FINDER database, described disease burden using disability-adjusted life years relative to funding for 16 major tropical diseases. Across a range of diseases, RHD received the least funding relative to disease burden with a DNI = 3.83 (similar to cysticercosis, DNI = 2.71 and soil transmitted helminths, DNI = 2.41). RHD thus remains severely underfunded relative to disease burden.
Interventions to Improve Awareness
Limited awareness of GAS, ARF, and RHD among all stakeholder groups means that education is needed to access the disease-altering benefits of care. Education and awareness activities have been recognized as a core element of RHD control initiatives by World Health Organization (WHO), the ASAP program from South Africa (awareness, surveillance, advocacy, and prevention) to eradicate RHD in our lifetime, and initiatives form Australia and New Zealand.
Tools for Implementing RHD Control Programmes (TIPs) provides a framework for design, implementation and evaluation of RHD control programs (see Fig. 12.1 , Chapter 12 ). Throughout the framework, education and increased awareness are highlighted as critical elements. As a consequence, Reach (to stop RHD) as part of RHD Action (incorporating the World Heart Federation (WHF)) has funded a series of small grants, resulting in an awareness and education program for health workers, communities, and patients.
In addition, it is important to note that programs that have managed to demonstrate a significant reduction in the incidence of ARF and prevalence of RHD, such as the French Caribbean islands of Guadeloupe and Martinique, Tunisia, Cuba, and regions of Brazil, have all included awareness raising and education as a key component of the RHD control programs.
A large number of awareness-raising activities have been conducted around the world, though very few have been rigorously evaluated. Table 15.1 outlines a number of illustrative awareness-raising programs and Box 15.1 provides a case study of one of the best described awareness campaigns in a developed country setting.
|Schools/Teachers||Clinics/Clinicians||Written Materials||Audiovisual and Media||Other||Key Message||Impact|
|French Caribbean, 1980s||Film shown||Newsletters and training workshops||Pamphlets to parents||Film shown in schools||Term for ARF simplified||Sore throat seems benign but can cause serious heart damage||Decline in ARF as part of comprehensive program|
|Teachers and school children involved; details unspecified||Workshops, seminars or continuing health education courses||Thousands of pamphlets disseminated, and posters displayed in Spanish||Advertisements and programming on provincial radio and TV channels||“What to do if you have a sore throat” “Importance of adherence to secondary prophylaxis”||Decline in ARF as part of comprehensive program|
|773 teachers trained in workshops||74 health workers trained in workshops||Posters, pamphlets, wall charts, and heart models||Not described||Case control study of the intervention||Rheumatic fever is a serious, life threatening disease that damages the heart (among others)||Statistically significant improvement in knowledge for health workers, teachers, and school children|
|Leaflets and poster distributed at training sessions||Workshops and train-the-trainer events held||These included posters, pamphlets, and wall charts||Radio interviews and film about the project produced||Key messages disseminated through religious institutions||Not stated||Part of a broader program of RHD control|
|South Africa 2006–present||Focus on school and learners||Training frontline health workers, especially school and community nurses||Posters, pamphlets, wall charts, and training material||TV, radio and YouTube, multiple messages, DVDs||Rheumatic fever week||A sore throat can break your heart||Decline in ARF as part of comprehensive program|
|Nepal, 2007 onwards||RHD included in school curriculum||Training >1500 community health workers + 26 train-the-trainer workshops||Posters, calendars, hoarding boards.||TV documentary and radio jingles||Not stated||Part of a broader program of RHD control.|
|Zambia, 2014 onwards||50 primary healthcare workers||Initially 7 workshops held across the capital||Posters, pamphlets, wall charts, and training materials disseminated to workers and provided to workers to train other workers at their own institutions.||TV, radio, and documentaries. Radio major medium of education with directed programming, discussions, and interviews.||RHD week||Seek skilled care for sore throat and anaphylaxis training |
“A sore throat can damage your heart|”
|Uptake of awareness-raising activities by government|
|Teaching program for school children—distributed to all primary and secondary schools||Education program||Posters and pamphlets||www.health.gov.fj/wp-content/uploads/2019/03/Fiji-Guidelines-for-Acute-Rheumatic-Fever-and-Rheumatic-Heart-Disease-Diagnosis-Management-and-Prevention.pdf||Website and social media. Rheumatic fever week.||“A sore throat can kill you”|
In 2011 New Zealand began the largest ever concerted effort to reduce the incidence of ARF, focusing on high risk Māori and Pacific Island populations. The Rheumatic Fever Prevention Program had three main strategies:
Increase awareness of ARF, what it is and how to prevent it
Reduce household crowding
Improve access to timely and effective treatment for GAS infections
The program cost $65 million NZD over 5 years.
The first rheumatic fever awareness campaign was conducted in winter 2014 with the intention of “increasing awareness among parents and caregivers of at-risk children and young people about the cause and effects of rheumatic fever.” A number of key messages were developed and linked to “calls to action.” Delivery of these messages was intensive, including television advertising, radio, newspaper advertising, posters for health providers, and pamphlets in schools. Evaluation suggested that 60% of parents took health action as a direct result of the campaign.
The 2015 campaign built on this foundation and used a “chain of theorized outcomes” to underpin expected behavior change. The 2015 Rheumatic Fever Awareness Campaign was independently evaluated using document review, interviews with policy makers, eight focus groups, and over 250 phone calls to the target audience. The results of the program were that population-based primary prevention of ARF through sore throat management may be effective in well-resourced settings where high-risk populations are geographically concentrated. However, where high-risk populations are dispersed, a school-based primary prevention approach appears ineffective and is expensive.
The focus on ARF in New Zealand spurred communication innovations in some parts of the country: a wallet card to help empower families to show it to health providers and ask for their child’s throat to be checked, stickers (“got a sore throat? Tell a grown up”), including messages about ARF embedded in telephone “on-hold” music for the hospitals.
In Auckland areas with a high burden of RHD, other strategies were developed by the Ministry of Youth Development, including a Rheumatic Fever Ambassadors Program, “Clear ya throat” spoken word stories and a “Dramatic Fever Edutainment Road show.” Many of these elements were codesigned by young people from high-risk communities, including competitions to develop mobile phone applications and technology resources to share key messages. A feature of the New Zealand communications programs was the use of young people living with ARF or RHD in communications material. Using relatable people and stories improved uptake and impact of key messages.
By 2017, a survey of caregivers conducted alongside an RHD echocardiography screening project found that over 90% had heard of ARF and most people were aware that it is caused by sore throat. Over 80% of participants indicated that children with a sore throat should see a doctor or a nurse straight away.
The scale of community education efforts in New Zealand is unprecedented and overwhelmingly positive in raising awareness of ARF. Synthesis of lessons from this New Zealand experience is ongoing. Emerging critiques include concerns that young people from high-risk communities received relatively didactic messages, some of which may have heightened stigma associated with ARF and RHD. Although the New Zealand context has unique elements, unintended consequences of education campaigns should always be considered and, if possible, evaluated.
A wide range of awareness-raising initiatives for ARF and RHD have been delivered around the world and community education is likely to be a prerequisite for programmatic success. With the passing of the World Health Assembly Resolution on ARF and RHD in May 2018, there is a clear need to formalize and scale-up these efforts to achieve global control of RHD. Increasing rigor is needed to ensure the best possible interventions are delivered most effectively, evaluated, and improved upon ( Box 15.2 ).