Mental Health Support for Autoimmune Disease Patients

Researchers discovered that over half of the patients had rarely or never reported their mental health symptoms to a clinician, and that the range of probable mental health and neurological symptoms is substantially greater than previously documented.

The researchers asked 1,853 people with systemic auto-immune rheumatic disorders (SARDs) such lupus and rheumatoid arthritis about their neurological and psychological symptoms. The researchers also polled 289 doctors, predominantly rheumatologists, psychiatrists, and neurologists, and performed 113 interviews with patients and clinicians.

Fatigue, hallucinations, worry, and depression were among the 30 symptoms that the team inquired about. Most of these symptoms were fairly common among the participants in the research.

For example, 55% of SARD patients exhibited depression, 57% had anxiety, 89% had severe fatigue, and 70% had cognitive dysfunction. The overall prevalence of symptoms was far higher than previously assumed, and notably higher than in a control group of healthy volunteers.

Patients’ descriptions of mental health symptoms differed greatly from clinician estimates. For example, three times as many lupus patients had suicide thoughts as physicians predicted (47% versus 15%). Clinicians were frequently shocked and disturbed by the frequency and breadth of symptoms that patients described to the researchers.

Some clinicians were far more concerned with joint symptoms than mental health concerns since they believed that SARDs did not usually affect the brain.

However, other clinicians felt that these symptoms were under-estimated because patients were rarely asked about them in clinic. One rheumatology nurse interviewed said: “Doctors don’t go looking for it [hallucinations], so if we don’t ask we don’t think it exists much.”

The study discovered disputes among practitioners who specialize in different elements of therapy, but very few hospitals had good procedures in place where rheumatologists, neurologists, and psychiatrists collaborated.

Dr Tom Pollak from the Institute of Psychiatry, Psychology and Neuroscience, King’s College London, said 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.”

According to the findings of the study, patients are frequently hesitant to report mental health problems to professionals, fearing stigma. Patients frequently reported that even when they did communicate their mental health problems with professionals, they were frequently ignored or not documented correctly 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.”

Dr 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. 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.”

Despite finding neurological and psychiatric symptoms to be under-elicited in clinic, under-identified in research, and under-represented in clinical guidelines, the research team describes almost all practitioners as extremely eager to enhance care. Rapidly expanding understanding, such as the behavioral and cognitive effects of chronic inflammation and a growing number of possible biomarkers, provides reason for optimism.

Sarah Campbell, Chief Executive of the British Society for Rheumatology, commented: “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 policy makers that only 8% of rheumatology departments in England and Wales have a psychologist embedded in their team. We fully support the study team’s conclusion that more inter-disciplinary and patient-clinician collaboration is needed to ensure equity in the care of patients’ mental and physical health.”

The Rt Hon the Lord Blunkett said: “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. 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.”

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