The long-term damage caused by psychosomatic misdiagnosis
By: Communications
Chronic diseases misdiagnosed as psychosomatic can lead to long-term damage to physical and mental wellbeing, according to new research from the University of Cambridge and UEA.
A new study published today reveals that a ‘chasm of misunderstanding and miscommunication’ is often experienced between clinicians and patients.
This leads to autoimmune diseases such as lupus and vasculitis being wrongly diagnosed as psychiatric or psychosomatic conditions.
The research team say that the impact on patients is profound and lasting.
A study involving over 3,000 participants – both patients and clinicians – found that these misdiagnoses (sometimes termed “in your head” by patients) were often associated with long-term impacts on patients’ physical health and wellbeing and damaged trust in healthcare services.
The researchers are calling for greater awareness among clinicians of the symptoms of such diseases, which they recognise can be difficult to diagnose, and for more support for patients.
Prof Felix Naughton, from UEA’s School of Health Sciences, said: “Diagnosing autoimmune rheumatic diseases can be challenging, but with better awareness among clinicians of how they present, we can hopefully reduce the risk of misdiagnoses.
“And while there will unfortunately inevitably still be patients whose condition is not correctly diagnosed, with the correct support in place, we may be able to lessen the impact on them.”
Autoimmune rheumatic diseases such as rheumatoid arthritis, lupus and vasculitis are chronic inflammatory disorders that affect the immune system and can damage organs and tissues throughout the body.
They can be very difficult to diagnose as people report a wide range of different symptoms, many of which can be invisible, such as extreme fatigue and depression.
How this research was carried out and key findings
Dr Melanie Sloan, from the University of Cambridge, led the study exploring patient-reported experiences from two large groups, each of over 1,500 patients, and in-depth interviews with 67 patients and 50 clinicians.
Patients who reported that their autoimmune disease was misdiagnosed as psychosomatic or a mental health condition were more likely to experience higher levels of depression and anxiety, and lower mental wellbeing.
For example, one patient with multiple autoimmune diseases said: “One doctor told me I was making myself feel pain and I still can’t forget those words. Telling me I’m doing it to myself has made me very anxious and depressed.”
More than 80 per cent said it had damaged their self-worth and 72 per cent of patients reported that the misdiagnosis still upset them, often even decades later.
Misdiagnosed patients also reported lower levels of satisfaction with every aspect of medical care and were more likely to distrust doctors, downplay their symptoms, and avoid healthcare services.
As one patient reported, it “has damaged my trust and courage in telling doctors very much. I even stopped taking my immunosuppressive medicine because of those words”.
Following these types of misdiagnoses, patients often then blamed themselves for their condition.
Dr Melanie Sloan, from the Department of Public Health and Primary Care at the University of Cambridge, said: “Although many doctors were intending to be reassuring in suggesting a psychosomatic or psychiatric cause for initially unexplainable symptoms, these types of misdiagnoses can create a multitude of negative feelings and impacts on lives, self-worth and care.
“These appear to rarely be resolved even after the correct diagnoses. We must do better at helping these patients heal, and in educating clinicians to consider autoimmunity at an earlier stage.”
What next?
The study authors recommend several measures for improving support for patients with autoimmune rheumatological diseases.
They propose that clinicians should talk about previous misdiagnoses with patients, discuss and empathise with their patients as to the effects on them, and offer targeted support to reduce the long-term negative impacts.
Health services should ensure greater access to psychologists and talking therapies for patients reporting previous misdiagnoses, which may reduce the long-term impact on wellbeing, healthcare behaviours, and patient-doctor relationships.
The research was funded by LUPUS UK and The Lupus Trust.
‘I still can’t forget those words: mixed methods study of the persisting impacts of psychosomatic and psychiatric misdiagnoses’ is published in the journal Rheumatology.
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