Diagnostic overshadowing in systemic lupus erythematosus (SLE): A qualitative study

Abstract

Objectives: SLE diagnostic journeys can be protracted, with negative impacts on long-term health. This study explored the role of diagnostic overshadowing (DOS) in delaying SLE diagnoses. Methods: A qualitative analysis of 268 completed SLE patient surveys and 25 in-depth interviews purposively selected from the 2018-2021 Cambridge University Systemic Autoimmune Rheumatic Disease (SARD) studies. Results: The majority of participants appear to have experienced DOS and there were indications that sustained DOS (S-DOS) may add years to some SLE diagnostic journeys. Symptom misattributions which contributed to S-DOS included: (1) “Medical mystery”, particularly when the clinician indicated that it was too expensive to keep investigating. (2) Negative misattributions (e.g. “nothing seriously wrong”), often due to a failure to connect multiple symptoms as possible indicators of an underlying condition. (3) Diagnostic roadblocks, including, in the case of some participants, a mental health, psychosomatic, ME/CFS or fibromyalgia (mis)diagnosis. (4) Moral misattributions, such as to “malingering”, which could undermine patient help-seeking and/or clinician help-giving. Conclusion: Our data suggests that DOS may be an important factor in diagnostic delay in patients with SLE.