More than half of all patients with autoimmune diseases also suffer from depression and anxiety — but most are never asked about their mental health, a new study finds.
Surveying more than 1,800 patients, British researchers found more than half rarely or never reported their mental health symptoms to their doctor. This could mean the range of mental health and neurological symptoms is much wider than has been reported.
“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,” said study co-author Dr. Melanie Sloan in a Cambridge news release. She is in the university’s department of public health and primary care.
Another author, Dr. Tom Pollak, said the numbers were “startling.”
“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,” said Pollak, who is from the Institute of Psychiatry, Psychology & Neuroscience at King’s College London.
“Everyone working in health care with these patients should routinely ask about mental well-being, and patients should be supported to speak up without fear of judgment. No patient should suffer in silence,” Pollak added.
For the study, the researchers surveyed 1,853 patients with autoimmune rheumatic diseases, such as lupus and rheumatoid arthritis. They were asked about neurological and psychiatric symptoms. The researchers also surveyed nearly 300 doctors, mostly rheumatologists, psychiatrists and neurologists, and interviewed 113 patients and doctors.
The investigators asked about fatigue, hallucinations, anxiety and depression.
They found that 55% of the patients experienced depression, 57% experienced anxiety, 89% experienced severe fatigue and 70% experienced cognitive dysfunction, meaning problems with thinking and memory.
The rates were much higher than the doctors’ estimates. For example, three times as many lupus patients reported having suicidal thoughts compared with the estimate by doctors (47% versus 15%). Doctors were often surprised and concerned by the frequency and range of symptoms patients reported to the researchers.
The researchers found that patients were often reluctant to report mental health problems, fearing that they might be stigmatized. Patients said that even when they did share their mental health symptoms, they were often not commented on or documented accurately.
One patient said: “Feel guilty and useless as well as depressed and very unwell. I don’t really feel supported, understood, listened to, or hopeful at all. It is awful living like this…. All just feels hopeless.”
Sloan said it’s important to identify these unspoken problems.
“It’s only by fully engaging patients in their health care 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,” Sloan said.
The report was published July 26 in the journal Rheumatology.
For more on mental health and autoimmune diseases, head to the Global Autoimmune Institute.
SOURCES: University of Cambridge, news release, July 26, 2023
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