Hidden mental health symptoms in people living with long term autoimmune diseases

Auto-immune conditions in half of the patients experience mental health conditions such as depression or anxiety, yet the majority are rarely or never asked in the 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 autoimmune 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, the experience of most of these symptoms was very widespread. 55% of SARD patients were experiencing depression, 57% experiencing anxiety, 89% experienced severe fatigue, and 70% experienced cognitive dysfunction.

The study showed that patients were often reticent to report to clinicians mental health problems they might be having, sometimes feeling that they might be stigmatized. Patients frequently said that even when they did share their mental health symptoms with clinicians, they were often not commented on or not documented accurately or at all.

Reference: Study finds ‘startling’ levels of hidden mental health symptoms among people living with long-term autoimmune diseases; Rheumatology, DOI: 10.1093/rhe/kead369.