Females with Autoimmune Diseases ‘Less Likely to be Believed’ Than Males and Face Longer Diagnostic Delays

Females with autoimmune diseases are significantly more likely than males to have their autoimmune disease misdiagnosed as a psychiatric or psychosomatic condition, according to a study of more than 6,600 patients.

In an international study published today in The Lancet’s eClinicalMedicine, researchers analyzed the reported diagnostic experiences of 6,607 people with autoimmune diseases. The research, led by the University of Cambridge and University of East Anglia (UEA), also found that females were more likely to face delays in getting a correct diagnosis, and hence the right treatment.

The study found that 43% of females reported that their autoimmune symptoms had previously been misattributed to a psychiatric cause, compared with 33% of males. They were also more likely to report having their symptoms misdiagnosed as being ‘psychosomatic’ – in other words, that physical symptoms were caused or worsened by psychological factors – with this reported by 34% of females compared with 22% of males.

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. Many autoimmune diseases are more common in females.

Diagnosis can be challenging because many autoimmune diseases initially cause symptoms such as fatigue, pain, sleep disturbance or low mood, which are common in the general population. Symptoms can also affect multiple parts of the body and change over time.

After taking account of factors including age, disease group, continent and household finances, the researchers found that females were almost 50% more likely to report having received a psychiatric misdiagnosis and nearly 75% more likely to report a psychosomatic misdiagnosis than males.

Interestingly, reports of being misdiagnosed with a different physical disease was slightly higher among males than females (48% vs 44%).

The research was co-designed with patients, charities and clinicians and uncovers important parts of the diagnostic journey that are often not recorded in medical records.

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.

“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.”

The researchers also found that females reported longer periods between the onset of symptoms and receiving their diagnosis, as well as more healthcare consultations. Among males, the most frequently reported time to diagnosis was less than three months, whereas among females it was one to two years.

Dr Melanie Sloan from the Department of Public Health and Primary Care at the University of Cambridge, and Norwich Medical School, 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.

“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 high rates of reported psychiatric, psychosomatic and alternative physical misdiagnoses among both sexes reflects the difficulty of diagnosing autoimmune diseases, especially those which have 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 diagnoses are given.

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."

David D’Cruz, Professor and Consultant Rheumatologist, Guy’s Hospital

“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 recognized – and to listen to patients”.

Listening to Patients

Unlike studies based solely on medical records, this research focused on patients’ own accounts of their diagnostic journeys. 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 say 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 say clinicians may benefit from acknowledging diagnostic uncertainty, providing clear advice about when patients should seek further assessment, and revisiting previous diagnostic decisions when new symptoms or information emerge.

They also highlight 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.