A new study found that psychosomatic and psychiatric misdiagnoses in patients with systemic autoimmune rheumatic diseases were associated with long-term psychological distress, diminished self-worth, and reduced trust in medical professionals.

In the mixed-methods study, published in Rheumatology, investigators analyzed data collected from 2021 to 2022 from 3,396 surveyed patients across two cohorts—LISTEN (n = 1,543) and INSPIRE (n = 1,853). More than 80% of those who perceived they had been misdiagnosed reported lasting emotional distress and distrust in their health care providers. Over 90% of participants were female, reflecting both the demographic pattern of many systemic autoimmune rheumatic diseases (SARD) and a limitation acknowledged by the investigators.

The study found that 72% of patients continued to be upset about their misdiagnoses, and those affected had significantly lower levels of mental well-being, with higher rates of anxiety and depression (all P < .001) compared with those without such experiences. Patients reporting psychosomatic misdiagnoses also had significantly lower "medical security"—defined as confidence that clinicians would be available and able to help when needed (P < .001). This group was more likely to underreport symptoms (P < .001) and engage in health care avoidance (P = .012), though no statistically significant link was found with medication adherence (P = .2).

"It's so sad it took me developing nonrepairable damage to my joints, which showed on [magnetic resonance imaging] before any medical [professionals] truly believed me and my pain," one participant noted. Another recalled being told their symptoms were psychosomatic: "I still can't forget those words."

Quantitative findings were supported by qualitative interviews, which underscored the emotional burden of perceived disbelief. "Telling me I'm doing it to myself has made me very anxious and depressed," another participant shared. Some patients described experiencing trauma-related responses, such as hypervigilance over symptoms or avoiding care entirely because of the fear of dismissal.

"Our evidence suggests that clinicians should explicitly acknowledge previous misdiagnoses, discuss and empathize with their patients as to the potential ongoing impacts, and offer targeted support to reduce the persisting negative impacts," said lead study author Melanie Sloan, of the Primary Care Unit in the Department of Public Health and Primary Care at the University of Cambridge.

Full disclosures are available in the published study.