The aim of the patient-focused study was to understand the impact of delays in diagnosis and misdiagnosis of patients with lupus and other systemic autoimmune rheumatic diseases, especially in relation to their quality of life and symptoms such as fatigue.
Providing this valuable data helps represent and explain the experiences of patients to a broad audience of doctors, academics, researchers, and patients thus, raising awareness and improving patient experiences.
Findings from the study suggest that diagnostic delays and misdiagnoses are common in systemic lupus erythematosus and connective tissue diseases and can damage patients’ trust in physicians particularly when physicians have poor knowledge of lupus. Results also suggest that patients value physicians who take a holistic approach, listening to, and believing the reporting of their symptoms, in achieving a diagnosis and in managing the disease post-diagnosis.
A key message from the paper is that improved knowledge of lupus amongst GPs and all physicians, regardless of specialism, is required as the multi-system nature of the disease necessitates a multi-disciplinary approach.
LUPUS UK is extremely grateful to everyone who took part in this research study and would like to thank Melanie Sloan who brought this research proposal to the charity and then led the project superbly.