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 […]
Combination of text messages and voice messages can help patients to take their medicine
Digital interventions are effective in helping patients in primary care take the medicines they have been prescribed, according to the first UK study of whether highly tailored text and voice messages are useful as a tool to improve medication adherence. The new study, called Medication Adherence for Patient’s Support, or MAPS, proves the importance of […]
Diagnostic delays for people with lupus described in new study
People living with lupus report frequent lengthy time delays between their first symptoms and their lupus diagnosis, in new research from the University of Cambridge and LUPUS UK. The research indicates that the delays to diagnosis could be improved if clinicians had better knowledge of the disease, listened to and believed patient-reported symptoms and looked […]
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