Females with autoimmune diseases more likely to be misdiagnosed with psychiatric conditions, study finds
Study of more than 6,600 patients also found females wait longer for a correct diagnosis
Females with autoimmune diseases are significantly more likely than males to have their condition misdiagnosed as a psychiatric or psychosomatic problem, according to a study of more than 6,600 patients.
Researchers analysed the reported diagnostic experiences of 6,607 people with autoimmune diseases.
The international study was published in The Lancet's eClinicalMedicine and led by the University of Cambridge and the University of East Anglia (UEA).
It also found females were more likely to face delays in getting a correct diagnosis, and therefore the right treatment.
What the study found
The study found 43% of females reported that their autoimmune symptoms had previously been misattributed to a psychiatric cause, compared with 33% of males.
Females were also more likely to report being misdiagnosed as having a "psychosomatic" condition, meaning physical symptoms caused or worsened by psychological factors.
This was reported by 34% of females, compared with 22% of males.
After taking account of factors including age, disease group, continent and household finances, researchers found females were almost 50% more likely to report a psychiatric misdiagnosis than males.
They were also nearly 75% more likely to report a psychosomatic misdiagnosis.
Reports of being misdiagnosed with a different physical disease were slightly higher among males than females, at 48% compared with 44%.
Autoimmune diseases occur when the immune system mistakenly attacks the body's own tissues.
They include conditions such as rheumatoid arthritis, lupus and multiple sclerosis, and many are more common in females.
Diagnosis can be challenging because many autoimmune diseases first cause symptoms such as fatigue, pain, sleep disturbance or low mood, which are common in the general population.
Symptoms can also affect several parts of the body and change over time.
Shaista Tayabali, co-author and patient partner, said: "The differences between the sexes in misdiagnoses for people with autoimmune diseases is stark. The fact that females reported higher rates of psychiatric and psychosomatic misdiagnoses than males, yet reported lower misdiagnoses for other physical diseases, suggests that historical gender biases remain a challenging aspect of the diagnostic journey."
She added: "Although labels such as hysteria are outdated, and fortunately rarely used nowadays, as women we still often have a harder time having our symptoms believed and therefore addressed accurately."
Longer waits for a diagnosis
Researchers also found females reported longer periods between the onset of symptoms and receiving a diagnosis, as well as more healthcare consultations.
Among males, the most frequently reported time to diagnosis was less than three months.
Among females, it was one to two years.
Dr Melanie Sloan, from the University of Cambridge and the University of East Anglia, said: "Patients with autoimmune diseases can present with symptoms that can initially be difficult to explain medically, and sometimes it can take months or years before a diagnosis becomes clear."
She added: "Our findings highlight that psychological or mental health explanations can be given too soon. This is true for both sexes, but our study suggests that females may be particularly vulnerable to these types of misdiagnoses."
The researchers said the high rates of reported psychiatric, psychosomatic and alternative physical misdiagnoses among both sexes reflect the difficulty of diagnosing autoimmune diseases.
This is especially the case for those with few visible signs or results that show in blood tests.
The team is calling for doctors to consider autoimmune diseases before any psychiatric or psychosomatic diagnosis is given.
Professor David D'Cruz, consultant rheumatologist at Guy's Hospital, said: "This is not about saying that a psychiatric diagnosis is never correct. People can have both autoimmune and psychiatric conditions, and it is increasingly understood that psychiatric symptoms can be part of an autoimmune disease, especially in diseases like lupus which can directly affect the brain. They can also be a very natural response to living with life-changing illnesses."
He added: "The important message is that when symptoms persist, evolve or involve multiple systems, clinicians must be open minded and consider whether there is an underlying autoimmune disease that has not yet been recognised - and to listen to patients."
Listening to patients
The research was co-designed with patients, charities and clinicians.
It looks at parts of the diagnostic journey that are often not recorded in medical records.
Unlike studies based solely on medical records, it focused on patients' own accounts.
Participants were asked about the time from symptom onset to diagnosis, the number of healthcare consultations they had, and the types of diagnoses they reported receiving before their autoimmune diagnosis.
The researchers said patient perspectives are particularly important in diseases where symptoms may not be easily visible or where there is no definite diagnostic test.
Wendy Diment, patient partner in the study, said: "Most studies use medical records, but these are very one-sided as patient's views are very rarely recorded and we often have different views on what is causing our symptoms to our doctors. They also don't always record when we first became unwell and the difficulties in getting our diagnosis, and they're very unlikely to be corrected when a psychosomatic 'in your head' type diagnosis is then found to be wrong."
Improving diagnosis
The researchers said clinicians may benefit from acknowledging diagnostic uncertainty and giving clear advice about when patients should seek further assessment.
They also suggested revisiting previous diagnostic decisions when new symptoms or information emerge.
They highlighted the importance of continuity of care and listening carefully to patients, particularly when there is not yet a clear explanation for their symptoms.
Dr Sloan said: "Ultimately, we need to understand why these differences occur before we can design effective solutions. Our next step is exploring the experiences and voices behind these numbers and working with patients and clinicians to identify ways of reducing diagnostic delays and improving care. Listening to and valuing people's accounts and views should always be part of research and the diagnostic process."
The study was funded by The Lupus Trust, Vasculitis UK, Sjögren's UK, Lupus UK and SRUK.