Socio-demographic trends in the identification and management of patients with aortic stenosis- a mixed methods study to establish the current status and identify areas for improving health equity

Background Aortic Stenosis (AS) is the commonest valve lesion requiring intervention in developed countries, and its incidence is rising with an ageing population. Small studies have suggested differences in treatment and outcomes for ethnic minority and low socioeconomic groups. It is unclear whether these are due to differences in disease burden, symptoms, health-seeking behaviour or rates of diagnosis and referral. There are no definitive epidemiological data or data on management of AS by ethnicity or socio-demographics in the UK. Covid-19 has highlighted and potentially widened health inequalities. The impact of these on the outcomes of patients with AS is unknown. NHS England has called for urgent action to tackle inequalities, acknowledging the requirement of high-quality data to understand the extent of the problem. Research questions 1. What is the socio-demographic (ethnicity/sex/deprivation) distribution of patients being diagnosed with and treated for AS in England, and are there any differences in outcomes? 2. What has been the impact of the Covid-19 pandemic on the above? 3. What are the areas for improvement to address potential health inequalities along the patient s journey? Aims and Objectives To describe the socio-demographic make-up of patients diagnosed with and treated for AS in England, using national linked datasets, and engage with all stakeholders to identify areas for improving access to healthcare and patients experiences. Methods Work-package-1: Establishing the socio-demographic make-up of patients being diagnosed with and treated for AS using national linked datasets. We will utilise large real-world datasets: -CPRD data to assess epidemiology and estimate the incidence and prevalence of AS, and any sociodemographic differences. -CVD-COVID-UK consortium to access linked NICOR datasets to establish treatment practice and the effect of Covid-19 on these. Work-package-2: Qualitative study to explore patients and stakeholders views and experiences of AS diagnosis and treatment, any impact of the pandemic, and identify areas for targeted interventions to improve engagement and reduce disparities along the patient pathway. Formation of a Collaborative: We will synthesize the findings of this study to engage with existing NIHR Health Informatics Collaboratives (HIC) at centres with more diverse populations, with the aim of obtaining future funding to explore local level data at more granular level, to identify areas for targeted interventions and co-develop and test future interventions. Timeline for delivery WP1: -CVD-COVID-UK trusted research environment data curation and analysis (2 months) (approvals in place) -CPRD data extraction and analysis (4 months) (approvals in place) Simultaneous WP2: -Ethics application for WP2 (2 months) -WP2 recruitment, data collection and data analysis (8 months) -Qualitative data interpretation/manuscripts (4 months) -Synthesizing the findings and stakeholder workshop (2 months) Anticipated Impact and Dissemination We will disseminate the findings in community settings, as well as nationally, via Heart Valve Voice. A stakeholder event will be held to discuss next steps. The outputs will raise awareness of the disease, and allow engagement with communities and healthcare providers, to address areas for improvement identified by this study. The results will inform a Programme Grant to look at more granular local-level data, co-design and test targeted interventions.