The majority of patients with autoimmune conditions such as lupus and rheumatoid arthritis experience mental health conditions, yet they are rarely or never asked about symptoms, a new study suggests.
University of Cambridge and King’s College London researchers found that more than half of the patients had rarely or never reported their mental health symptoms to a clinician.
Additionally, the range of possible mental health and neurological symptoms is much wider than previously reported.
Researchers say patients should be supported to speak up about their symptoms without fear of being stigmatised.
Scientists surveyed neurological and psychiatric symptoms amongst 1,853 patients with systemic autoimmune rheumatic diseases (SARDs) such as lupus and rheumatoid arthritis.
Some 289 clinicians, mostly rheumatologists, psychiatrists and neurologists, were also surveyed, and 113 interviews were conducted with patients and clinicians.
Researchers asked about 30 symptoms, including fatigue, hallucinations, anxiety and depression.
They found that among the patients in the study, experience of most of these symptoms was very widespread.
More than half (55%) of SARD patients were experiencing depression, 57% experiencing anxiety, 89% had experienced severe fatigue and 70% had experienced cognitive dysfunction, the study funded by The Lupus Trust and LUPUS UK suggests.
The overall prevalence of symptoms was significantly higher than previously thought, and much higher than in a control group of healthy volunteers, researchers found.
The mental health symptoms described by patients contrasted strongly with clinician estimates.
For example, three times as many lupus patients reported experiencing suicidal thoughts compared to the estimate by clinicians (47% versus 15%).
The researchers also found that clinicians were often surprised and concerned by the frequency and wide range of symptoms patients reported.
Dr Tom Pollak, from the Institute of Psychiatry, Psychology & Neuroscience at King’s College London, said the study highlights the importance of all clinicians asking their patients about mental health.
He added: “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 healthcare with these patients should routinely ask about mental wellbeing, and patients should be supported to speak up without fear of judgment. No patient should suffer in silence.”
According to the study published in Rheumatology, some clinicians were much more focused on joint symptoms over mental health symptoms as they thought SARDs do not commonly affect the brain.
However, other clinicians felt these symptoms were underestimated because patients were rarely asked about them.
One of the rheumatology nurses interviewed said: “Doctors don’t go looking for it (hallucinations]), so if we don’t ask we don’t think it exists much.”
According to the research, patients were often reluctant to report mental health problems, sometimes feeling that they might be stigmatised.
Patients frequently said that even when they share their mental health symptoms, they were often not commented on or not documented accurately or at all.
One patient said: “Feel guilty and useless as well as depressed and very unwell. I don’t really feel supported, understood, listened to, hopeful at all. It is awful living like this…. All just feels hopeless.”
Melanie Sloan, from the Department of Public Health and Primary Care at the University of Cambridge, said: “The low level of reporting we identified is a major concern as problems with mental health, fatigue and cognition can be life-changing, and sometimes life-threatening.”
The research team suggests that despite the findings, almost all clinicians were highly motivated to improve care.
Sarah Campbell, chief executive of the British Society for Rheumatology, said: “This study highlights the urgent need for improvements in the access patients have to integrated mental health support.
“Given what the study finds on the prevalence of this issue and the deep impact neurological and psychiatric symptoms have on patients, it should be of grave concern to policymakers that only 8% of rheumatology departments in England and Wales have a psychologist embedded in their team.”