Females diagnosed with autoimmune diseases are considerably more likely than males to have their conditions initially misdiagnosed as psychiatric or psychosomatic, according to a large-scale international study. The research, which analysed the experiences of 6,607 individuals, also revealed that women face longer delays in receiving accurate diagnoses and appropriate treatment.
Published in The Lancet’s eClinicalMedicine and led by the University of Cambridge and the University of East Anglia (UEA), the study found that 43% of females reported their autoimmune symptoms had previously been misattributed to a psychiatric cause, compared to 33% of males. Furthermore, 34% of females reported their symptoms were misdiagnosed as 'psychosomatic' – where physical symptoms are believed to be caused or worsened by psychological factors – versus 22% of males.
Autoimmune diseases, such as rheumatoid arthritis, lupus, and multiple sclerosis, occur when the immune system mistakenly attacks the body's own tissues. Many of these conditions are more prevalent in females. Diagnosis can be complex due to initial symptoms like fatigue, pain, and sleep disturbances, which are common and can mimic other conditions.
After accounting for various factors, the researchers found that females were almost 50% more likely to report a psychiatric misdiagnosis and nearly 75% more likely to report a psychosomatic misdiagnosis than males. Interestingly, males reported a slightly higher rate of misdiagnosis with a different physical disease (48% vs 44%).
The study, co-designed with patients, charities, and clinicians, highlights crucial aspects of the diagnostic journey often absent from medical records. Patient partner Shaista Tayabali commented on the stark sex differences, suggesting that historical gender biases persist, making it harder for women to have their symptoms believed and accurately addressed.
The research also indicated that females reported longer periods between symptom onset and diagnosis, alongside more healthcare consultations. While the most frequent diagnosis time for males was under three months, for females it ranged from one to two years.
Dr Melanie Sloan from the University of Cambridge and Norwich Medical School, University of East Anglia, stated that psychological or mental health explanations can be given prematurely, with females appearing particularly vulnerable to these types of misdiagnoses. The high rates of misdiagnoses reflect the inherent difficulty in diagnosing autoimmune diseases, especially those with subtle or non-visible signs.
The research team is urging doctors to consider autoimmune diseases before resorting to psychiatric or psychosomatic diagnoses. Professor David D’Cruz, Consultant Rheumatologist at Guy’s Hospital, emphasised that while psychiatric conditions can co-exist with autoimmune diseases or be a response to chronic illness, clinicians must remain open-minded and listen to patients when symptoms persist or involve multiple systems.
Unlike studies relying solely on medical records, this research prioritised patients' personal accounts of their diagnostic journeys. Patient partner Wendy Diment noted that medical records often fail to capture patients' views or the full extent of diagnostic difficulties.
The researchers suggest that clinicians could benefit from acknowledging diagnostic uncertainty, providing clearer guidance on seeking further assessment, and revisiting previous decisions. They stress the importance of continuity of care and actively listening to patients, especially when symptoms lack immediate explanation.
Dr Sloan added that understanding the reasons behind these sex differences is crucial for developing effective solutions. The next step involves further exploring patient experiences to identify ways to reduce diagnostic delays and improve care.
