Highlights
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Prevalence and Identification of Neuropsychiatric Symptoms in Systemic Autoimmune Rheumatic Diseases: An International Mixed Methods Study
Summary
Aim
A limited range of neuropsychiatric symptoms have been reported in systemic autoimmune rheumatic diseases (SARS), with varying symptom prevalence. This study aimed to investigate a broader range of potential symptoms than previous studies, compare patients’ self-reports with clinicians’ estimates, and explore barriers to symptom identification.
Methods
Mixed methods were used. Data from ADRS patients (n = 1853) were compared with controls (n = 463) and physicians (n = 289). The in-depth interviews (n = 113) were analyzed thematically. Statistical tests compared means of survey items between: patients and controls, 8 different SARD groups, and clinical specialties.
Results
Self-reported lifetime prevalences of all 30 investigated neuropsychiatric symptoms (including cognitive, sensorimotor, and psychiatric symptoms) were significantly higher in patients with systemic autoimmune rheumatic diseases (SARS) than in controls.
Validated instruments assessed that 55% of ADRS patients currently suffered from depression and 57% from anxiety. Barriers to identifying neuropsychiatric symptoms included:
1) Limits to knowledge, guidelines, objective tests and cooperation between specialties.
2) Subjectivity, invisibility and credibility of the symptoms.
3) Underobtaining, undernotification and underdocumentation.
A smaller proportion of physicians (4%) reported that they never/rarely asked patients about mental health symptoms than 74% of patients who reported that they were never/rarely asked in the clinic (p < 0.001). .
More than 50% of patients with systemic autoimmune rheumatic diseases (SARS) never or rarely reported their mental health symptoms to doctors; a proportion underestimated by <10% by doctors (p < 0.001).
Conclusion
- Self-reported prevalences of neuropsychiatric symptoms are significantly higher in patients with systemic autoimmune rheumatic diseases (SARS) than in controls, and are greatly underestimated by most clinicians.
- Research that relies on current medical records and guidelines is unlikely to accurately reflect patients’ experiences of neuropsychiatric symptoms.
- Better communication between specialties and greater patient involvement in systemic autoimmune rheumatic disease (SARS) care and research is needed
Comments
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 that more than half rarely or never reported their mental health symptoms to their doctor. This could mean that the range of neurological and mental health 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. Dr. Melanie Sloan, in a Cambridge news release. She is in the university’s public health and primary care department.
Another author, Dr. Tom Pollak, said the figures were "shocking."
"We’ve known for some time that having a systemic autoimmune disease can negatively impact mental health, but this study paints a surprising picture of the breadth and impact of these symptoms," said Pollak, of the Institute of Psychiatry, Psychology and Neuroscience at the King’s College London.
"Everyone who works in healthcare 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, 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 researchers asked about fatigue, hallucinations, anxiety and depression.
They found that 55% of patients experienced depression, 57% experienced anxiety, 89% experienced severe fatigue, and 70% experienced cognitive dysfunction, that is, problems with thinking and memory.
The rates were much higher than doctors’ estimates. For example, three times as many lupus patients reported having suicidal thoughts compared to doctors’ estimates (47% vs. 15%). Doctors were often surprised and concerned by the frequency and variety of symptoms that patients reported to researchers.
The researchers found that patients were often reluctant to report mental health problems, fearing they might be stigmatized. Patients said that even when they shared their mental health symptoms, they were often not discussed or accurately documented.
One patient said: "I feel guilty and worthless, as well as depressed and very bad. I don’t really feel supported, understood, listened to or hopeful at all. It’s horrible to live like this... Everything feels hopeless." Sloan said it’s important to identify these unspoken problems.
"Only by fully involving patients in their medical care and asking their views will we be able to determine the extent of these often hidden symptoms and help patients get the understanding, support and treatment they need," he said. Sloan.
The report was published in the journal Rheumatology .
