Research by the University of Cambridge and King’s College London has suggested that the range of mental health and neurological symptoms is much wider than previously reported, as half of the patients with systemic autoimmune rheumatic diseases (SARDs) involved in the study had rarely or never reported their mental health symptoms to a clinician.
With SARDs, connective tissues such as cartilage, joint synovium and skin are more frequently targeted, as seen in conditions such as systemic lupus erythematosus, rheumatoid arthritis and systematic sclerosis.
In the Prevalence and identification of neuropsychiatric symptoms in systemic autoimmune rheumatic diseases study, the team surveyed neurological and psychiatric symptoms in 1,853 patients with SARDs. Almost 290 clinicians, mostly rheumatologists, psychiatrists and neurologists, were also surveyed and 113 interviews with patients and clinicians were conducted.
The team asked about 30 symptoms, including fatigue, hallucinations, anxiety and depression. Among the patients in the study, which was funded by the Lupus Trust and LUPUS UK, experience of most of those symptoms was found to be very widespread.
Approximately 55% of SARD patients experienced depression, 57% experienced anxiety, 89% experienced severe fatigue and 70% experienced cognitive dysfunction.
They also noticed a contrast in symptoms between patients and clinicians estimates: 47% of lupus patients reported that they were experiencing suicidal thoughts, compared to the 15% estimate by clinicians.
Dr Tom Pollak from the institute of psychiatry, psychology and neuroscience, King’s College London, said: “This study paints a startling picture of the breadth and impact of these symptoms. Everyone working in healthcare with these patients should routinely ask about mental well-being, and patients should be supported to speak up without fear of judgement.”
Many patients in the study also expressed hesitancy about reporting mental health problems to clinicians. Patients said that when they did share their mental health symptoms with clinicians, they were often not commented on or documented correctly, if at all.
Dr Melanie Sloan from the Department of Public Health and Primary Care at the University of Cambridge said: “The low level of reporting […] identified is a major concern as problems with mental health, fatigue and cognition can be life-changing, and sometimes life-threatening.”
She added: “It’s only by fully engaging patients in their healthcare and by asking them for their views that we will be able to determine the extent of these often-hidden symptoms, and help patients get the understanding, support and treatment they need.”