Awareness, Education, and Advocacy

Community

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.

Teachers

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.