A questionnaire survey for improving awareness of rheumatic heart disease among school-aged children in India.

OBJECTIVES: We examined the level of awareness about Rheumatic Heart Disease (RHD) among school-aged children in a rural district of India and evaluated the effects of a questionnaire-based survey in improving the level of awareness. METHODS: The study involved 8,646 students aged 10-16 years from 20 schools in West Midnapore, India which was conducted in August 2017. We examined changes in the level of awareness of RHD using a 29-point scoring system in seven domains. The baseline questionnaire survey assessed students' knowledge and was followed by a multimedia presentation about RHD and a post-intervention survey using the same questionnaire. The questionnaire included 9 questions on different aspects of RHD including prevalence, nature of disease, symptoms, determinants, treatment options, impact of the disease and diagnosis. RESULTS: The mean age of the study population was 13 years and 46% were boys. At baseline, the mean level of knowledge about RHD was 42% (12.2 out of 29 points). After the school-based presentation, the score improved to a mean of 55% (15.9 points on the 29-point scale), a 31% relative improvement. Improvement in students' knowledge was noted across all seven domains, individually and combined (p < 0.001). CONCLUSIONS: Awareness among children in rural India about RHD is modest. A school-based intervention could help in improving awareness about this chronic condition and may promote secondary prophylaxis to reduce the morbidity and mortality from RHD.

The personal and clinical impact of screen-detected maternal rheumatic heart disease in Uganda: a prospective follow up study.

BACKGROUND: Pre-existing maternal cardiac disease is a significant contributor to adverse maternal, fetal, and neonatal outcomes. In 2015-2017, our team conducted the first community-based study of maternal rheumatic heart disease (RHD) in sub-Saharan Africa and identified RHD in 88% of those with pre-existing heart disease. Here we conducted a follow up investigation of women previously identified with RHD, describing clinical and echocardiographic outcomes, identifying barriers to medical adherence and evaluating the personal impact of RHD. METHODS: A 2 week prospective follow up was completed at sites in Central and Eastern Uganda. Participants underwent a three-step mixed methods study comprising of 1) direct structured interview targeting clinical history and medication adherence, 2) echocardiogram to evaluate left-sided heart valves, and 3) semi-structured guideline interview to elicit personal impacts of RHD. RESULTS: The team evaluated 40 (80%) of the original 51 mothers with RHD at a median post-partum time of 2.5 years after delivery (IQR 0.5). Echocardiographic data showed improvement in nine women with the remaining 31 women showing stable echocardiographic findings. Adherence to Benzathine penicillin G (BPG) prophylaxis was poor, with 70% of patients either poorly adherent or non-adherent. Three major themes emerged from interviews: 1) social determinants of health (World Health Organization, Social determinants of health, 2019) negatively affecting healthcare, 2) RHD diagnosis negatively affecting female societal wellbeing, 3) central role of spouse in medical decision making. CONCLUSIONS: Screening echocardiography can identify women with pre-existing rheumatic heart disease during pregnancy, but long-term follow-up in Uganda reveals adherence to medical care following diagnosis, including BPG, is poor. Additionally, mothers diagnosed with RHD may experience unintended consequences such as social stigmatization. As identification of occult RHD is critical to prevent adverse pregnancy outcomes, further research is needed to determine how to best support women who face a new diagnosis of RHD, and to determine the role of screening echocardiography in high-risk settings.

Does genetics matter for disease-related stigma? The impact of genetic attribution on stigma associated with rheumatic heart disease in the Western Cape, South Africa.

INTRODUCTION: A common concern in African genomic research is that such work may cause, or increase, stigma associated with particular diseases or population groups. While there is some evidence suggesting that genetic attribution of disease might impact stigma, there exists no evidence for the situation in African populations. With increasing genomic research in African populations, questions about the effect of genetic attribution on disease-related stigma are salient for stakeholders involved in implementation and regulation. To understand better the relationship between stigma and genetic attribution, we interviewed people with Rheumatic Heart Disease (RHD) in the Western Cape of South Africa. METHOD: We conducted 11 focus group discussions with RHD patients of mixed-ancestry in the Western Cape, exploring the impact of genetic attribution on stigma. Participants had previously consented to participate in genomic research, attending information sessions on genetics. We explored the impact of genetic attribution by introducing both genetic and environmental causes to RHD and by specifically probing how these various causes would likely impact selected features of disease stigma. RESULTS: Participants reported varying experiences of stigma relating to RHD, such as labelling, social exclusion and discrimination at the workplace. They had some understanding of genetics, either in general, or in relation to their illness. Participants' understanding depicted multiple causal models to explain RHD including genetic, environmental and bacterial causation. Overall, participants did not make a connection between genetics as a cause of RHD and their experiences of stigma. DISCUSSION: In this study we found no support for the concern that genetic attribution of RHD, understood by participants in our study as a genetic predisposition to developing the disease, would impact stigma associated with it. Our findings provide some reassurance that genomic research may be unlikely to cause an increase in disease-related stigma in the South African context.

Quality of life in patients with rheumatic heart disease.

OBJECTIVE: To assess the quality of life in patients with rheumatic heart disease. METHODS: This case-control study was conducted at the Gulab Devi Chest Hospital, Lahore, Pakistan, from October 2016 to March 2017, and comprised patients with rheumatic heart disease.Convenient sampling technique was used. The 36-item short form health survey was used to collect data. The scores of several dimensions of the questionnaire were calculated and compared using appropriate statistical tests. SPSS 16 was used for data analysis. RESULTS: Of the 300 subjects, 150(50%) each were cases and controls. There were 45(30%) males and 105(70%) females among the cases and 63(42%) males and 87(58%) females among the controls. The affected individuals reported significant impairment not only in total score (p<0.001) but also in all its domains (p<0.05 each). CONCLUSIONS: Rheumatic heart disease imposed a considerable burden on the quality of life.

Motivations of women in Uganda living with rheumatic heart disease: A mixed methods study of experiences in stigma, childbearing, anticoagulation, and contraception.

BACKGROUND: Rheumatic heart disease (RHD) is a leading cause of premature mortality in low- and middle-income countries (LMICs). Women of reproductive age are a unique and vulnerable group of RHD patients, due to increased risk of cardiovascular complications and death during pregnancy. Yet, less than 5% of women of childbearing age with RHD in LMICs use contraceptives, and one in five pregnant women with RHD take warfarin despite known teratogenicity. It is unclear whether this suboptimal contraception and anticoagulant use during pregnancy is due to lack of health system resources, limited health literacy, or social pressure to bear children. METHODS: We conducted a mixed methods study of 75 women living with RHD in Uganda. Questionnaires were administered to 50 patients. Transcripts from three focus groups with 25 participants were analyzed using qualitative description methodology. RESULTS: Several themes emerged from the focus groups, including pregnancy as a calculated risk; misconceptions about side-effects of contraceptives and anticoagulation; reproductive decision-making control by male partners, in-laws, or physicians; abandonment of patients by male partners; and considerable stigma against heart disease patients for both their reproductive and financial limitations (often worse than that directed against HIV patients). All questionnaire respondents were told by physicians that their hearts were not strong enough to support a pregnancy. Only 14% used contraception while taking warfarin. All participants felt that society would look poorly on a woman who cannot have children due to a heart condition. CONCLUSIONS: To our knowledge, this is the first qualitative study of female RHD patients and their attitudes toward cardiovascular disorders and reproduction. Our results suggest that health programs targeting heart disease in LMICs must pay special attention to the needs of women of childbearing age. There are opportunities for improved family/societal education programs and community engagement, leading to better outcomes and patient empowerment.

The impact of a peer support group for children with rheumatic heart disease in Uganda.

OBJECTIVE: To assess the impact of a peer-support group on knowledge, quality of life, and social support for children with rheumatic heart disease (RHD). METHODS: Children diagnosed with RHD and receiving 4-weekly injectable penicillin were invited to participate in a monthly support group for 6 months. Pre- and post-intervention assessments included a baseline RHD knowledge assessment, a measure of health related quality of life (HRQOL) (PedsQLTM4.0), and a measure of social support (Hawthorne Friendship Scale). Groups incorporated elements of cooperative play and team building, RHD education, and emotional support. RESULTS: 42 participants attended ≥3 groups and were included in the analyses. Attending support groups resulted in increased total HRQOL scores (60.3v 70.2, p<0.001), as well as the following HRQOL sub-scores (physical functioning 55.3v 68.6 (p<0.001), social functioning 64.2v 75.8 (p<0.001) and school functioning 59.2v 69.1 (p=0.001)). Significant increases in Friendship Scale scores (15.4v 19.7, p<0.001) and RHD Knowledge scores were observed (3.6v 6.4, p<0.001). CONCLUSIONS: Peer-support groups may be effective at normalizing decreased HRQOL scores and increasing RHD disease knowledge and social support. PRACTICAL IMPLICATIONS: Peer-support groups implemented in conjunction with RHD screening can minimize the negative psychosocial effects associated with early RHD detection.

Secondary prevention for screening detected rheumatic heart disease: opportunities to improve adherence.

Background: Secondary prevention is an effective treatment for rheumatic heart disease (RHD), but ensuring high adherence to prophylaxis over many years is challenging and requires understanding of local factors. Methods: Participants were young people diagnosed with RHD through echocardiographic screening in Fiji. We used a structured interview to evaluate the following: health seeking behaviours; attitudes, practice, barriers and potential improvement strategies for adherence to antibiotic prophylaxis; and adolescent-friendly qualities of the health service. Results: One hundred and one participants were interviewed (median age, 17.2 years). Adherence was very low overall (adequate in 6%). Sore throat and fever with sore joints were experienced in the preceding year by 42% and 28%, respectively. Barriers to receiving treatment included taking alternate treatments and the perception that symptoms were benign and self-limiting. Reasons for missing prophylaxis injections included lack of awareness, feeling well, transport cost and access, and medication unavailability (>40% of participants each). The injection health service had many perceived strengths, but inclusion of adolescents in decision making, and quality of educational materials were deficiencies. Reminder strategies, particularly phone-based reminders, were considered helpful by 94%. Conclusions: We identified several factors influencing secondary prevention that may be used to develop interventions to improve adherence.

The benefits and harms of rheumatic heart disease screening from the perspective of the screened population.

BACKGROUND: A reduction in the burden of rheumatic heart disease (RHD) may be possible by identifying the condition while the patient is still asymptomatic. Currently, there is much debate about whether it is appropriate to screen for the presence of rheumatic heart disease (RHD) in a symptomless population. The purpose of this study was to identify self-reported benefits and harms from the perspective of screening participants and their families. METHODS: In order to describe participant experiences and changes in behaviour post-screening, we interviewed a sample of parents/caregivers of children who were screened for the presence of RHD between 2007 and 2012 (n=276). A total of n=91 parents/caregivers of children diagnosed with either definite, probable or possible/borderline RHD ('abnormal' cases) were interviewed either by telephone or in-person, along with at least two matched controls (n=185 'normal' controls). RESULTS: We observed evidence of long-standing anxiety and changes in physical activity among those who received an 'abnormal' screening result. The screening event appeared to have minimal impact on those who received a 'normal' result. There was some evidence of improved sore throat advice-seeking following the screening event, particularly among case respondents; however this group showed poorer understanding of the screening test compared to control respondents. CONCLUSIONS: Among other points of discussion, this study brings to light issues regarding a) diminished physical activity habits among those receiving an abnormal result; b) levels of worry (and reassurance) among the screened population, depending on screening outcome; and c) general issues regarding the health literacy of the screened population.

Mortality due to rheumatic heart disease in the Kimberley 2001­2010.

OBJECTIVE: To determine the mortality burden of rheumatic heart disease (RHD) in the Kimberley. METHODS: A retrospective medical record audit was conducted for patients identified by the Western Australian (WA) RHD Program as deceased between 2001 and 2010. Patients with documented evidence strongly suggesting or confirming RHD were included in the study. Crude and age-standardised death rates were calculated. RESULTS: A total of 34 patients were identified as having RHD, 15 of whom died of RHD-attributable causes and 93% of whom were Aboriginal. The most common causes of death were arrhythmias and heart failure. The mean age at death of Aboriginal people was 41 years. The age-standardised death rate in Aboriginal people attributable to RHD in the Kimberley was 12.5 per 100,000 people per year, which is 1.6 times the rate of Indigenous Australians nationally. RHD contributed to 342 potential life years lost over the 10-year period. CONCLUSION: RHD contributes to significant premature mortality and higher rates of death in Aboriginal people in the Kimberley, which is consistent with other areas of northern Australia. While the recent establishment of the WA RHD Program will endeavour to improve mortality and morbidity due to RHD in the Kimberley, further research and investment is needed to address this disease of socioeconomic disadvantage.

Health related quality of life of children with rheumatic heart diseases: reliability of the Brazilian version of the Pediatric Quality of Life Inventory™ Cardiac Module scale.

BACKGROUND: This study aimed to translate the 'Pediatric Quality of Life Inventory™ (PedsQL™ 3.0) Cardiac Module' into Portuguese, adapt it to Brazilian culture, and assess its psychometric properties (validity and reproducibility), and to calculate health-related quality of life scores on the PedsQL 4.0 and PedsQL™ 3.0 Cardiac Module Scales for a group of patients 5 to 18 years old with rheumatic heart disease. METHODS: The methods suggested by the authors of the original version of the questionnaire included 1) translation by an expert panel; 2) translation back into English and revision by the authors of the original version; 3) pilot study with seven children and parents in each of three age ranges (5 to 7, 8 to 12, and 13 to 18 years old); and 4) assessment of the measurement properties. In this stage, the PedsQL™ 3.0 Cardiac Module and the PedsQL 4.0 Generic Scale were applied to a sample comprising 109 children and adolescents with rheumatic heart disease and their parents or caregivers. The version for parents or caregivers was administered separately on the same day. RESULTS: The values of Cronbach's alpha for all scales assessed in the questionnaire (heart problems and treatment [symptoms], problems with perceived physical appearance, treatment anxiety, cognitive problems, and communication problems) varied from 0.6 to 0.8, indicating good internal consistency. Correlation was found between the scores for the Cardiac Module and the Generic Scale (0.36-0.86), demonstrating convergent validity (Spearman's correlation coefficient, p < 0.01). The symptoms, problems with perceived physical appearance, and cognitive and communication problem domains were able to distinguish between groups of patients with mild and moderate/severe heart disease (Student's t-test, p < 0.05). The intraclass correlation of the interobserver reproducibility was adequate (0.76 to 0.94 among the patients [children/adolescents] and 0.76 to 0.84 among their caregivers). The correlation between the patients' scores and their parents' scores varied from 0.50 to 0.86 (Pearson's correlation coefficient, p < 0.01). CONCLUSIONS: The Brazilian version of the PedsQL™ 3.0 Cardiac Module was shown to be reliable. The application of this questionnaire in practice will be very useful for all professionals charged with the care of children and adolescents with heart diseases.

Awareness and knowledge of prophylaxis for infective endocarditis in patients with severe rheumatic heart disease.

Prevention of infective endocardit s (IE) is mportant because it has a high mortalty rate.This study sets out to to gather information from patients who were at risk of developing IE of their knowledge of the need for prophylaxis for the disease. Forty-one black patients suffering from severe rheumatic heart disease (RHD) were interviewed. Only one patient (2.4%) was regularly visiting a dentist to maintain good oral health and only five (12.2%) had received advice about the need for antibiotic cover prior to dental extraction. The vast majority of patients (97.5%) visited a dentist only when driven by dental pain, 36.6 % had to travel for more than an hour to reach their nearest dentist, and 87.8% indicated that they brushed their teeth. It may be concluded that in this group of black patients with severe RHD there was a lack of knowledge of the need for and of measures recommended for prophylaxs against IE. In addition, attempts by the health care team to ensure good oral health and access to dental care for these patients were inadequate, if not non-existent.

Profile of secondary prophylaxis among children with rheumatic heart disease in Alexandria, Egypt.

A cross-sectional study was conducted in specialist children's hospitals in Alexandria, which aimed to evaluate the current regimen of secondary prophylaxis for children suffering from rheumatic heart disease. Two-thirds of the patients had complied with their prophylactic regimen. Prophylactic failure occurred in one-third of the patients, raising doubts about the efficacy of the brands of penicillin prescribed. Recurrence of rheumatic fever was recorded in 37.3% of the patients, with semiruban or rural residence and non-compliance with secondary prophylaxis the significant risk factors. These unsatisfactory findings suggest the need for a more effective strategy of primary and secondary prophylaxis for controlling rheumatic fever in our community.

[The risk factors for unfavorable outcomes in rheumatism]. / Faktory riska neblagopriiatnykh iskhodov revmatizma.

A prospective study was made of environmental factors effects on unfavorable cardial and cerebral outcomes of rheumatic fever (RF) assessed functionally, biochemically and psychologically. Some of RF predisposing factors (female sex, frequent nasopharyngeal infections, poor housing and occupational conditions) negatively affect outcomes of primary RF and contribute to emergence of valvular disease. The initial attack of activity I or III degree, pronounced carditis, active rheumatic process at discharge, recurrences, absence of year-round prophylaxis allow prognostication of valvular heart disease. The majority of the factors promoting valvular and circulatory disorders also contribute to the onset of psychic abnormalities, astheno-organic syndrome, in particular.

[The prognosis of work capacity in patients with rheumatic defects after heart operations]. / Prognoz trudosposobnosti bol'nykh s revmaticheskimi porokami posle operatsii na serdtse.

A study of rheumatic patients after operations on the heart indicates that working capacity prognosis is determined not only by the severity of the somatic state but also by social and psychological aspects. The authors revealed sociopsychological and clinical prerequisites of high and low working adaptation that allow to make a concrete working prognosis and establish rehabilitation programs for the individual rheumatic patients undergoing heart surgery.

Awareness about sore-throat, rheumatic fever and rheumatic heart disease in a rural community.

This I.C.M.R. study was conducted in 74 villages of Chiraigaon block, Varanasi, U.P., during the period March 1983 and December 1986. Before and after health education awareness survey about sore throat, rheumatic fever and rheumatic heart disease was carried out by interviewing 315 persons by stratified random sampling. The study shows that there is significant increase in the knowledge about most of the symptoms, causes, consequences and preventive measures of sore throat, rheumatic fever and rheumatic heart disease. This paper highlights the importance of health education as a vital component of rheumatic heart disease control programme.

[The "quality of life" of rheumatism patients following heart operations]. / O "kachestve zhizni" bol'nykh revmatizmom posle operatsii na serdtse.

Life quality indices related to work trends, level of work adaptation, social psychological personality features, severity of somatic condition were evaluated in 216 patients with rheumatism operated on for heart disease. The revealed causes and mechanisms of life quality decline are important for evaluation of working prognosis and development of rehabilitation programs for patients with rheumatism following operations on the heart.