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Mental troubles untold: autoimmunities reveal the dark side of the mind

More than half of patients with auto-immune conditions experience mental health conditions such as depression or anxiety, yet the majority are rarely or never asked in clinic about mental health symptoms, according to new research from the University of Cambridge and King’s College London. In a study published today in Rheumatology, researchers found that over half of the patients had rarely or never reported their mental health symptoms to a clinician, and that the range of possible mental health and neurological symptoms is much wider than has been previously reported. The team surveyed neurological and psychiatric symptoms amongst 1,853 patients with systemic auto-immune rheumatic diseases (SARDs) such as lupus and rheumatoid arthritis.

The researchers also surveyed 289 clinicians, mostly rheumatologists, psychiatrists and neurologists, and conducted 113 interviews with patients and clinicians. The 30 symptoms that the team asked about included fatigue, hallucinations, anxiety and depression. Among the patients in the study, experience of most of these symptoms was very widespread. 55% of SARD patients were experiencing depression, 57% experiencing anxiety, 89% had experienced severe fatigue and 70% had experienced cognitive dysfunction, for example. The overall prevalence of symptoms was significantly higher than previously thought, and much higher than in a control group of healthy volunteers. 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%). Clinicians were often surprised and concerned by the frequency and wide range of symptoms that patients reported to the researchers. Some clinicians were much more focused on joint symptoms over mental health symptoms as they held the opinion that SARDs do not commonly affect the brain. However, other clinicians felt that these symptoms were under-estimated because patients were rarely asked about them in clinic.  The study found disagreements between clinicians specialising in different aspects of care, but very few hospitals had effective systems where rheumatologists, neurologists and psychiatrists worked together.

The study showed that patients were often reticent to report their mental health problems, possibly fearing that they might be stigmatised. Patients frequently said that even when they did share their mental symptoms with clinicians, they were often not commented on or not documented accurately or at all. One patient expressed how this felt: “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.” The research team suggests that though they found neurological and psychiatric symptoms to be 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.

Dr. Tom Pollak, King’s College London, stated 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 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 Melanie Sloan from the Department of Public Health and Primary Care at the University of Cambridge commented: “This study highlights the urgent need for improvements in the access patients have to integrated mental health support. 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. 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.”

  • Edited by Dr. Gianfrancesco Cormaci, PhD, specialist in Clinical Biochemistry.

Scientific references

Sloan M et al. Rheumatology 2023 Jul 26:kead369.

Alexopoulos P et al. BMC Psychiatry. 2023; 23(1):513.

Anderson G et al. Cells. 2023 Apr 25; 12(9):1237.

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Dott. Gianfrancesco Cormaci
Dott. Gianfrancesco Cormaci
Laurea in Medicina e Chirurgia nel 1998, specialista in Biochimica Clinica dal 2002, ha conseguito dottorato in Neurobiologia nel 2006. Ex-ricercatore, ha trascorso 5 anni negli USA alle dipendenze dell' NIH/NIDA e poi della Johns Hopkins Univerisity. Guardia medica presso la casa di Cura Sant'Agata a Catania. In libera professione, si occupa di Medicina Preventiva personalizzata e intolleranze alimentari. Detentore di un brevetto per la fabbricazione di sfarinati gluten-free a partire da regolare farina di grano. Responsabile della sezione R&D della CoFood s.r.l. per la ricerca e sviluppo di nuovi prodotti alimentari, inclusi quelli a fini medici speciali.

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