Rheumatic heart disease patient event

Zühlke, Liesl; Perkins, Susan; Cembi, Sithembile

doi:10.1093/eurheartj/ehy199

Cited by 8 publications

(3 citation statements)

References 0 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…This sentiment is expressed in the statement encapsulating the Listen to My Heart events in South Africa, 'Nothing about me without me.' [13] The capacity of adult and paediatric support groups to improve patient adherence, and the success of a doctorpatient WhatsApp group in allowing patients to easily ask their doctor questions about RHD. The initiative was described as an 'extension of medical school' , and the experience 'makes me feel part of a complete contribution to someone's life. '…”

Section: Discussionmentioning

confidence: 99%

“…These participants had travelled to Cape Town for an annual event for people living with RHD named 'Listen to my Heart'; co-organised by RHD Action and the University of Cape Town to strengthen patient empowerment and advocacy by including, recognising and celebrating the RHD patient community. [13] After the patient event, the attendees participated in the researcher and patient workshop. A total of 26 people took part in the workshop.…”

Section: Participantsmentioning

confidence: 99%

See 1 more Smart Citation

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

et al. 2023

View full text Add to dashboard Cite

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.

show abstract

Section: Discussionmentioning

confidence: 99%

Section: Participantsmentioning

confidence: 99%

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

et al. 2023

View full text Add to dashboard Cite

show abstract

“…16 Thus far, the RHDGen Network has also developed additional indirect patient and community benefits, including increased access to RHD screening and patient care, developed and participated in patient/engagement events (eg, Listen to your heart). 17 Hosted disease/ genetics educational awareness activities, trained several experts in the field, as well as, advocated globally to change RHD from a neglected tropical disease status to a global health priority. In particular, our work on this and other RHD-related research projects has allowed us to work with WHO Africa to revise treatment guidelines for RHD in Africa.…”

Section: Incidental Outcomes and Benefitsmentioning

confidence: 99%

Rationale, Design, and the Baseline Characteristics of the RHDGen (The Genetics of Rheumatic Heart Disease) Network Study†

Machipisa

Chishala

Shaboodien

et al. 2023

Circ: Genomic and Precision Medicine

View full text Add to dashboard Cite

BACKGROUND: The genetics of rheumatic heart disease (RHDGen) Network was developed to assist the discovery and validation of genetic variations and biomarkers of risk for rheumatic heart disease (RHD) in continental Africans, as a part of the global fight to control and eradicate rheumatic fever/RHD. Thus, we describe the rationale and design of the RHDGen study, comprising participants from 8 African countries. METHODS: RHDGen screened potential participants using echocardiography, thereafter enrolling RHD cases and ethnically-matched controls for whom case characteristics were documented. Biological samples were collected for conducting genetic analyses, including a discovery case-control genome-wide association study (GWAS) and a replication trio family study. Additional biological samples were also collected, and processed, for the measurement of biomarker analytes and the biomarker analyses are underway. RESULTS: Participants were enrolled into RHDGen between December 2012 and March 2018. For GWAS, 2548 RHD cases and 2261 controls (3301 women [69%]; mean age [SD], 37 [16.3] years) were available. RHD cases were predominantly Black (66%), Admixed (23%), and other ethnicities (11%). Among RHD cases, 34% were asymptomatic, 26% had prior valve surgery, and 23% had atrial fibrillation. The trio family replication arm included 116 RHD trio probands and 232 parents. CONCLUSIONS: RHDGen presents a rare opportunity to identify relevant patterns of genetic factors and biomarkers in Africans that may be associated with differential RHD risk. Furthermore, the RHDGen Network provides a platform for further work on fully elucidating the causes and mechanisms associated with RHD susceptibility and development.

show abstract