Autoimmune conditions are rare diseases where the body attacks its own tissues and can lead to disability, long-term complications and death. Early diagnosis and treatment are essential to improving outcomes from these conditions. Over the last 20-years there have been significant advances in investigations and management of these conditions. However, access to hospital services, diagnostics and medications vary across the country and within the NHS. This study will describe trends in the outcomes of patients with specific autoimmune conditions and examine the effectiveness of services against guideline-driven parameters in England. As certain diseases are more common and occasionally thought to be more severe in particular ethnicities (e.g. lupus and Black ethnicity), we will also investigate whether a patient’s ethnicity or social background affects their disease outcomes.
We will be evaluating services from January 2015 to December 2022 by examining GP records via CPRD. We will describe the trends of key patient-related outcomes, including time to first hospital appointment and treatment; rates of disease-related complications (such as kidney failure) and death.
This project will provide doctors and patients with an evidence base for clinical pathways to manage specific autoimmune conditions which affect organ tissues and blood vessels (connective tissue diseases and vasculitis). We will also search for and investigate any health inequalities with a view to reducing differences and improving long-term outcomes for all patients.
Connective tissue diseases (CTD) and vasculitis are multi-system disorders associated with high morbidity and mortality. Timely diagnosis and management are vital for optimising outcomes in patients who often present with indolent initial symptoms. CTD and vasculitis survival rates have generally improved over time; however, they remain higher than the general population. Survival trends in the UK have not been explored since the regular use of biologic therapies for CTD or vasculitis. Furthermore, general trends in survival often underestimate potentially significant variation and inequities within patient groups and regions. Poor outcomes are often linked to ethnicity and age in patients with systemic lupus erythematosus (SLE), particularly Black ethnicities and younger age. Our goal is to use routinely collected health data to describe service delivery and health outcomes for people with CTD or vasculitis over a defined period, highlighting any health disparities within this vulnerable population.
Our study population will be individuals aged 18-104 years with incident diagnostic SNOMED codes for CTD or vasculitis who are registered with a primary care practice contributing to CPRD Aurum from January 2012 to December 2022.
We will describe attainable metrics regarding diagnostic incidence, medication initiation, disease-specific complications and all-cause mortality for CTD or vasculitis. We will search for the first appearance of relevant SNOMED codes, medication or complications using primary care records. A control group will be utilised to determine age, gender and ethnicity-adjusted mortality rate ratios. We will use interrupted time-series analyses and Poisson regression models to describe the incidence of disease-specific outcomes and mortality. Our over-arching goal will be to describe any variation in care across the country and to investigate its explanatory factors (e.g. deprivation, ethnicity). Output from this study will be submitted to a peer-reviewed journal and will help steer future UK CTD and vasculitis guidelines.
Primary outcome: Delay in diagnosis of CTD or vasculitis
Key secondary outcomes: 1) diagnostic incidence; 2) time to prescription of disease-modifying medications; 3) incidence of disease-specific organ damage and 4) all-cause 1-year mortality.
James Galloway - Chief Investigator - King's College London (KCL)
Samir Patel - Corresponding Applicant - King's College London (KCL)
Edward Alveyn - Collaborator - King's College London (KCL)
Kate Bramham - Collaborator - King's College London (KCL)
Mark Russell - Collaborator - King's College London (KCL)
Martin Gulliford - Collaborator - King's College London (KCL)
Maryam Adas - Collaborator - King's College London (KCL)
Patrick Gordon - Collaborator - King's College London (KCL)
Zijing Yang - Collaborator - King's College London (KCL)
HES Outpatient;Patient Level Index of Multiple Deprivation