Rheumatology experts called for improvements to patients' mental health support after a study uncovered "startling" levels of hidden mental health symptoms among people with autoimmune rheumatological conditions.
The research, from the University of Cambridge and King's College London (KCL), involved a survey of 1853 patients with systemic autoimmune rheumatic diseases such as lupus and rheumatoid arthritis. It asked about their experience of 30 neurological and psychiatric symptoms including fatigue, hallucinations, anxiety, and depression. Their answers were compared with those of 463 controls. The researchers also surveyed 289 clinicians — mainly rheumatologists, psychiatrists, and neurologists — and conducted 113 interviews with patients and clinicians.
More Than Half of Patients Experienced Mental Health Symptoms
The study, published in Rheumatology, reported that more than half of the patients had experienced mental health symptoms such as depression or anxiety, yet over half had rarely or never reported their symptoms to a clinician. Overall symptom prevalence was found to be significantly higher than previously recognised, and much higher than that in a control group of healthy volunteers.
The majority (74%) of patients said they were rarely or never asked about mental health symptoms during clinic visits, in stark contrast to the 4% of clinicians who said they never or rarely asked patients about symptoms.
Many patients were reticent to report problems, fearing that they might be stigmatised. Those who did share their symptoms often said that clinicians did not comment or document them accurately, or at all.
The range of possible mental health and neurological symptoms was much wider than had been previously reported. The most common self-reported symptom prevalences included:
- Severe fatigue 89%
- Cognitive dysfunction 70%
- Anxiety 57%
- Depression 55%
Clinicians Typically Underestimate Problems
The frequency of mental health symptoms described by patients also contrasted strongly with clinician estimates, the researchers found. For example, three times as many lupus patients (47%) reported experiencing suicidal thoughts compared with the estimate by clinicians (15%). Clinicians were often "surprised and concerned" by the frequency and wide range of symptoms that patients reported to the researchers.
The team commented that clinicians were sometimes much more focused on joint symptoms than mental health symptoms. Although some clinicians felt that mental symptoms were under-estimated because patients were rarely asked about them in clinic, many believed that systemic autoimmune rheumatic diseases rarely affected the brain. There were also disagreements between clinicians in different specialties, and very few hospitals had effective systems where rheumatologists, neurologists and psychiatrists worked together.
Co-author Dr Tom Pollak, clinical lecturer at the Institute of Psychiatry, Psychology and Neuroscience at KCL, said the study painted "a startling picture of the breadth and impact of these symptoms". Healthcare professionals should routinely ask patients with autoimmune disease about their mental wellbeing, he said, and patients should be able to speak up without fear of judgement. "No patient should suffer in silence."
First author Dr Melanie Sloan, a research associate in 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."
Psychiatric Symptoms Often Unrecorded
However, the researchers said that although neurological and psychiatric symptoms were "under-elicited in clinic, under-identified in research, and under-represented in clinical guidelines", they described almost all clinicians as "highly motivated to improve care".
Sarah Campbell, chief executive of the British Society for Rheumatology, said the society fully supported the study's conclusion that more inter-disciplinary and patient-clinician collaboration was needed. The study highlighted "the urgent need for improvements in the access patients have to integrated mental health support", she said.
Given the prevalence and "deep impact" of neurological and psychiatric symptoms, "it should be of grave concern to policy makers that only 8% of rheumatology departments in England and Wales have a psychologist embedded in their team", Ms Campbell added.
The study was part-funded by the National Institute for Health Research (NIHR) Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King's College London.