There are very high levels of psychological distress among people living with auto-immune diseases such as lupus and rheumatoid arthritis, according to a major study published today.
The work was carried out by Dr Tom Pollak of King’s College London, UK, and his team.
They explain that systemic autoimmune rheumatic diseases (SARDs) have been linked to a limited range of neuropsychiatric symptoms. But they felt that a larger investigation was warranted.
In this work, a wider range of symptoms was measured, and patient self-reports from the 1,853 participants were compared with estimates from 289 clinicians.
Results showed that rates of all 30 neuropsychiatric symptoms investigated (including cognitive, sensorimotor and psychiatric symptoms) were significantly higher in patients’ self-reports than in the background population. Analysis suggests that 57% of patients have depression, and 55% have anxiety.
Several barriers to identifying symptoms were found, including low awareness of the symptoms and guidelines about them, the subjective nature of the symptoms, and under-reporting.
Although 96% of physicians reported asking patients about mental health symptoms in clinic, only 26% of patients reported being asked.
Details of the study appear in Rheumatology today. The authors write: “Neuropsychiatric symptom self-reported prevalences are greatly underestimated by most clinicians.
“Research relying on medical records and current guidelines is unlikely to accurately reflect patients’ experiences of neuropsychiatric symptoms.”
Dr Pollak said: “The study highlights the importance of all clinicians asking their patients about mental health. We have known for some time that having a systemic autoimmune disease can negatively affect one’s mental health, but this study paints a startling picture of the breadth and impact of these symptoms.
“Everyone working in health care with these patients should routinely ask about mental wellbeing, and patients should be supported to speak up without fear of judgement. No patient should suffer in silence.”
Sloan, M et al. Prevalence and identification of neuropsychiatric symptoms in systemic autoimmune rheumatic diseases: an international mixed methods study. Rheumatology 26 July 2023; doi: 10.1093/rhe/kead369
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