A new “study paints a startling picture of the breadth and impact of these symptoms” on people with autoimmune disease.
Research from the University of Cambridge and King’s College London reveals that over 50% of individuals suffering from autoimmune conditions also endure mental health issues, such as depression or anxiety. However, the majority of these patients are seldom, if ever, questioned about their mental well-being during clinical visits.
Published in Rheumatology, the study finds that over half of the patients had scarcely, if ever, discussed their mental health symptoms with a healthcare professional. The research also exposes a far broader scope of potential mental health and neurological symptoms than previously assumed.
What are the hidden mental health symptoms in autoimmune diseases?
To find out, the research incorporated surveys of neurological and psychiatric symptoms among 1,853 patients diagnosed with systemic autoimmune rheumatic diseases (SARDs), including lupus and rheumatoid arthritis. Additionally, the research team surveyed 289 medical professionals, primarily rheumatologists, psychiatrists, and neurologists, and conducted 113 interviews with patients and clinicians.
Among the study participants, the prevalence of the 30 queried symptoms, including fatigue, hallucinations, anxiety, and depression, was strikingly high.
The most common mental health symptoms seen in autoimmune disease patients
For instance, 55% of SARD patients were grappling with depression, 57% with anxiety, 89% had encountered severe fatigue, and 70% had experienced cognitive dysfunction. These rates were substantially higher than prior estimates and exceedingly higher than those among a control group of healthy individuals.
The mental health symptoms reported by patients drastically contradicted the estimates provided by clinicians. For instance, suicidal thoughts were reported by three times as many lupus patients as clinicians had estimated (47% versus 15%).
Clinicians were often surprised and worried by how often and how many different kinds of symptoms patients told them about.
Why are neurological symptoms underestimated in autoimmune diseases?
Despite the clear indications, some clinicians were overly focused on joint symptoms, underestimating mental health symptoms based on the belief that SARDs seldom affect the brain.
However, others attributed this underestimation to the infrequent questioning about these symptoms during clinical visits.
As one rheumatology nurse said, “Doctors don’t go looking for it [hallucinations], so if we don’t ask we don’t think it exists much.”
The study exposes discrepancies among clinicians specializing in different aspects of care and points out the rarity of effective cooperative systems where rheumatologists, neurologists, and psychiatrists collaborate.
Dr. Tom Pollak of the Institute of Psychiatry, Psychology & Neuroscience at King’s College London 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. “
The study also reveals that patients often hesitated to disclose mental health issues to clinicians, fearing potential stigmatization. Even when they did share their mental health symptoms, they were often ignored, inaccurately documented, or not recorded at all.
One patient expressed their frustration: “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.”
Dr. Melanie Sloan of the Department of Public Health and Primary Care at the University of Cambridge expressed grave concerns over the significantly low reporting rates.
“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.”
Though the research team found that neurological and psychiatric symptoms are under-discussed in clinical settings, under-detected in research, and under-represented in clinical guidelines, they observed a high motivation among almost all clinicians to improve care. With quickly advancing knowledge about the behavioral and cognitive impacts of chronic inflammation and an expanding array of potential biomarkers, there are reasons for optimism.
The Rt Hon the Lord Blunkett added: “It’s both surprising and deeply concerning that almost half of lupus patients have experienced suicidal thoughts, and that clinicians greatly under-estimate the mental health burden of these chronic diseases. This highlights the importance of extra funding for the NHS and the holistic care that is urgently needed for these patients.”
How to improve mental health support for autoimmune patients?
Dr. Pollak emphasized: “Everyone working in healthcare 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.”
Dr. Sloan suggested: “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.”
The Rt Hon the Lord Blunkett added: “I echo the British Society of Rheumatologists’ concerns about the poor current provision of mental health support. Now is the time for the Government to act to give them the support they desperately need.”
Source: 10.1093/rhe/kead369
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