Myocarditis in England: National Epidemiology, Care Inequities, and Patient Perspectives

Background: Myocarditis, a potentially devastating inflammatory heart condition, poses a significant and escalating threat to public health, particularly among young adults. This under-recognised cardiac disease affects an estimated 1.3 million individuals globally each year, with the true burden likely more significant due to variations in diagnostic practices. Myocarditis can lead to severe complications in up to 25% of cases, including life-threatening arrhythmias, heart failure and sudden death. The landscape of myocarditis is rapidly evolving, driven by COVID-19, advancements in cancer therapies, and improved diagnostic capabilities. These factors have contributed to a rise in hospital admissions for myocarditis in England, underscoring the urgent need for enhanced understanding and management strategies. Despite its growing impact, critical gaps persist in our understanding, including a) epidemiological patterns and risk factors, b) disparities in care and outcomes, and c) impacts on patient experiences and quality of life. These knowledge deficits hinder the development of standardised, equitable, and effective care pathways nationwide, leaving patients and clinicians with significant unmet needs. Aims: This fellowship aims to (1) investigate the epidemiology and outcomes of myocarditis, including the impact of COVID-19; (2) evaluate regional and institutional variations in the diagnosis, management, and follow-up care across England; and (3) explore the perspectives of myocarditis patients, identifying barriers to timely diagnosis and equitable care. Methods: I will use a mixed-methods approach across three interconnected work packages (WPs). WP1: Epidemiological Analysis - employs a retrospective cohort study using NHS Digital Hospital Episode Statistics (HES) data to analyse trends in incidence and outcomes. I will leverage pre-approved HES access with data extraction and validation to be completed in year 1, laying the groundwork for analysis in year 2. WP2 combines secondary data analysis with a nationwide survey of hospital practices to assess institutional and regional variations in myocarditis care, with survey deployment early in year 2. WP3: Patient Experience Exploration- employs mixed methods, including semi-structured interviews and patient experience surveys. Building upon insights from WP1 and WP2, I will explore the experiences of myocarditis patients and identify barriers to timely diagnosis and follow-up care. Patient and Public Involvement (PPI): A dedicated PPI panel, comprising individuals with lived experience of myocarditis, will guide all stages of the research. The panel will shape study materials, ensure interviews are patient-centred, and co-develop accessible dissemination strategies, including podcasts and workshops, ensuring the research addresses patient priorities. Impact: This research will deliver insights into myocarditis care, informing tangible healthcare improvements. Mapping patient distribution and care variations will support equitable resource allocation and enhance access to specialised services. Understanding long-term outcomes will aid clinicians in identifying patients needing follow-up. By exposing care inconsistencies, this work will drive the development of standardised national guidelines, ensuring equitable, high-quality care. Insights into COVID-19's impact on myocarditis will improve preparedness for future pandemics. By incorporating patient perspectives, this research will address the psychological burden of myocarditis and highlight the need for patient-centred, emotionally supportive care. Findings will be disseminated through high-impact publications, workshops, and policy reports to influence stakeholders across the healthcare system.