Global Rheumatic Heart Disease Research Articles

‘Listen to my heart’: Qualitative researchers and people living with rheumatic heart disease collaborate to direct future RHD research


 
 
 
 Background. Rheumatic heart disease (RHD) is a preventable chronic cardiac condition that causes over 350 000 deaths annually, largely in low and middle-income countries, as a direct result of structural inequalities and inadequate access to comprehensive healthcare. People living with and affected by this disease are a key stakeholder group and need to be directing research priorities.
 Objective. To improve care and provide direction for future research, a group of qualitative researchers and pe living with RHD from six countries convened in Cape Town in 2016.
 Methods. People with RHD shared their lived experiences while RHD researchers, clinicians and advocates presented a spectrum of qualitative research methods to explore these experiences. The Continuum of Care© (CoC, developed by the Medtronic Foundation) was used as a framework to guide participant discussions. Thematic summaries of the discussions were undertaken in an iterative process throughout the workshop.
 Results. Three themes emerged in the summaries: there is no ‘typical’ patient journey; a biomedical focus on RHD does not reflect people’s lived experiences; and a diversity of research methods is required to investigate experiences of people living with RHD.Practice implications. Qualitative research methods are invaluable for allowing patient ‘voices’ to be heard. To this end, qualitative approaches should be incorporated in all RHD research to ensure maximum benefit for patients.
 Conclusion. Greater understanding of the patient journey was gained for strengthening and expanding the global RHD research agenda. Future research should reflect on and incorporate the realities of patients’ lived experiences, and these experiences should be integrated into healthcare models for chronic conditions.
 
 
 

The RHD Action Small Grants Programme: Small Investment, Big Return!

Rheumatic Heart Disease (RHD) remains endemic in low- and middle-income countries (LMICs) despite its virtual elimination in high-income countries. RHD Action was launched to amplify global efforts to control RHD in 2015 by World Heart Federation and Reach, with demonstration projects in Uganda and Tanzania, and support from Medtronic Foundation. The Small Grants Programme focuses on three domains: People and Communities, Medicines and Technologies, and Systems and Services. It is designed to support patient and community groups in promoting awareness, advocacy, and to build health workers’ capacity to prevent and treat RHD in LMICs. Our study evaluates the impact and effectiveness of the RHD Action Small Grants Programme.Methods: We conducted a mixed method study that involved both quantitative and qualitative surveys, through phone interviews and online surveys amongst the grant beneficiaries, to assess the impact and effectiveness of the small grant programme. An invitation to complete an online survey, using a Google Forms format, was issued to Small Grant Project Directors and Co-Directors that received funding for projects between 2017 and 2019. The online survey requested basic project information using tick boxes, Likert scales, and short answer open-ended questions about successes and challenges faced by recipients. The questionnaire also addressed recipients’ experience with the RHD Action Small Grants process – applying for the grant, nature and quality of support received to carry out project, the reporting process, and any media coverage provided. For the phone interviews, responses to the short-answer questions were used as the basis for follow up phone interviews. The discussions were recorded, transcribed and thematically analysed for new and recurring themes emerging from the in-depth discussions.Initiated in 2017, RHD Action has funded 21 proposals from a pool of 60 submissions. Recipient countries include Zambia, Uganda (2), Namibia, Kenya, Malawi (2), Egypt, Ethiopia, Nigeria (3), Rwanda (2), Mozambique, and Cameroon (2) as well as Fiji (2), the Philippines and Nepal. Five recipients were funded in 2017, eight in 2018 and eight in 2019. Project directors are primarily junior doctors and project managers supervised by senior mentors. In most cases, this is their first funding award. These projects have demonstrated tangible impact and have provided content for first manuscript and abstract submissions and presentations at professional conferences. Grant reports are presented as website stories showcasing the achievements of small local efforts with meaningful impact.For RHD Action, there is large return on a modest monetary investment resulting in a very visible, viable global RHD networking platform for enthusiastic community and provider activists.

Using Research: Educational Resources for Rheumatic Heart Disease in Women

Background: A study of Aboriginal women's journeys with Rheumatic Heart Disease (RHD) in Australia found that women and their families rarely had a deep understanding of the cause or implications of their disease. Despite contact with health staff, often since childhood, participants lacked understanding of the severity of their illness and its implications for childbearing. Several information/educational initiatives were developed to improve health literacy and have informed other strategies. Methods: Content review related to an evidence-base of selected educational resources developed for and by women with RHD, health services and researchers since 2015. Results: Three resources were selected for review. The first, an information flier on RHD in pregnancy for health professionals, was co-designed by Australasian Maternity Outcomes Surveillance System (AMOSS) researchers, midwives and Aboriginal health practitioners. The second, ‘Sharing a heartbeat’ is a two-part video in multiple Aboriginal languages, which explores fertility, pregnancy and family for Indigenous women with RHD. It was written and directed by Aboriginal women in partnership with researchers. The third is a flipchart with brief text and corresponding illustrations, that guides interaction between health providers and women with RHD in primary health low/middle-income settings. It was developed by Reach, a global RHD technical assistance organisation, building on the AMOSS resource. Discussion: A shared understanding of RHD is essential to improve knowledge and decision-making about the disease and its impact for women's health. The resources described show how research can learn from and inform a collaborative approach to health literacy at both local and global levels.

Methodologies for Estimating Rheumatic Heart Disease Prevalence and Incidence: A Systematic Review of Global Research

Background: Despite previous reviews identifying gaps in global rheumatic heart disease (RHD) burden estimates, no research has reviewed methodologies used to calculate such estimates. A systematic review was undertaken of RHD burden studies, to determine the type and distribution of methodologies used internationally, with further focus on the use of administrative data.

Rheumatic fever and rheumatic heart disease: Where are we now in South Africa?

South Africa continues to face unacceptably high rates of rheumatic fever (RF) and rheumatic heart disease (RHD), despite readily available and inexpensive preventive measures. However, in the past several years, key players in South Africa’s healthcare and political realms in addition to key players from many African nations have come together to acknowledge the persistent health burden attributable to RF/RHD and have agreed to a pledge of action to reduce it. The plan of action is a comprehensive RF/RHD prevention and treatment programme known as ASAP. The ASAP programme targets efforts to raise Awareness, establish Surveillance systems, Advocate for increased resources for treatment, and to promote Prevention strategies. South Africa currently has a demonstration site where activities in all of these key areas are currently underway. Efforts in the area of surveillance include a RHD prevalence study that aims to screen 4 000 school-aged children through the use of a mobile echo-surveillance unit. In addition to local efforts, South Africa will join an international initiative to create a global RHD registry that will aid in all aspects of prevention and treatment to further reduce the burden of disease attributable to RF/RHD.

The WHF Roadmap for Reducing CV Morbidity and Mortality Through Prevention and Control of RHD.

Rheumatic heart disease (RHD) is a preventable non-communicable condition that disproportionately affects the world's poorest and most vulnerable. The World Heart Federation Roadmap for improved RHD control is a resource designed to help a variety of stakeholders raise the profile of RHD nationally and globally, and provide a framework to guide and support the strengthening of national, regional and global RHD control efforts. The Roadmap identifies the barriers that limit access to and uptake of proven interventions for the prevention and control of RHD. It also highlights a variety of established and promising solutions that may be used to overcome these barriers. As a general guide, the Roadmap is meant to serve as the foundation for the development of tailored plans of action to improve RHD control in specific contexts.