New research highlights the impact of current and past medical interactions – especially adverse experiences – on medication adherence amongst lupus patients and indicates the clinician behaviours that help. People with incurable systemic auto-immune conditions, including lupus, often need lifelong medications to slow or stop the progression of the disease. Despite the fact that the […]
The strength of the wolf is the pack: how a study of lupus patient experiences involved patients
Lupus patient experiences Lupus patients joined a research team at the University of Cambridge to study the experiences of patients with lupus and related diseases. Lupus is a chronic auto-immune condition which can damage many parts of the body, affecting people’s lives deeply, yet can take years to diagnose. The research, called the LISTEN study, […]
‘Inconsistent’ shielding guidance increases fears for vulnerable lupus patients during the pandemic
Patients with lupus – and related systemic autoimmune rheumatic diseases, (or SARDs) – have experienced the UK’s shielding guidance as inconsistent, and many who felt they should have shielded were not advised to do so, according to new research on the experiences of patients with SARDs during the pandemic. Patients with Lupus and related diseases […]
How COVID-19-related healthcare changes affected patients with systemic autoimmune rheumatic diseases, including lupus
During the 2020 pandemic, patients with systemic autoimmune rheumatic diseases (including lupus) expressed a strong sense of being endangered from both the virus and the redeployment of medical resources. Decreased physician ability to help and increased patient reticence to seek help, created the ‘perfect storm’ for adverse outcomes, according to a study led by the […]
‘But you don’t look sick’: A qualitative analysis of the LUPUS UK forum
Online health forums and relationships with empowering clinicians reduce the isolation from living with a systemic autoimmune disease and can improve medical knowledge and resilience. This in-depth analysis of the LUPUS UK forum, led by Melanie Sloan from the BSG and involving forum members, LUPUS UK, psychologists and leading rheumatologists, found ‘Invalidation’ was the key […]
How lupus patients would like to be treated: study identifies physician behaviours that help build trust and medical security
Lupus patients – and those with related systemic autoimmune diseases – often experience persisting medical insecurity and negative healthcare-behaviours. These arise from traumatic diagnostic journeys and negative medical interactions, according to an in-depth study of patients’ experiences led by the University of Cambridge and Lupus UK. However, most patients also described secure and trusting relationships […]