Abstract Background/Aims Systemic autoimmune rheumatic diseases (SARDs) are complex, chronic conditions with diverse aetiologies and increasing global prevalence. They are difficult to diagnose due to overlapping, non-specific symptoms, lack of definitive tests, and varied presentations, leading to long diagnostic delays and frequent misdiagnoses. Gender disparities may compound these challenges as women disproportionately receive more medical misdiagnoses than their male counterparts. While studies on misdiagnosis in autoimmune diseases exist, most are disease-specific and rarely examine gender disparities across the broader spectrum of SARDs. This study utilized a mixed-methods approach to explore gender differences in the diagnosis of SARDs in a global patient population, incorporating both patient and clinician perspectives to better understand diagnostic challenges and disparities. Methods A mixed methods international study with diagnoses data from the Inequalities research project. Surveys were co-produced with patient partners and shared online via Qualtrics. Participants were asked how much time passed between their first SARD symptoms and receiving a diagnosis. They were also asked if they felt their disease was ever misdiagnosed as mental health, psychosomatic illness, or another physical condition. Chi-squared tests were conducted to determine the significance of differences between genders. Qualitative responses were obtained from open-ended survey responses and ongoing in-depth participant interviews. Results The survey was completed online by n = 4482 SARD participants, 90% being female and 87% white. Qualitative responses were obtained from open-ended survey responses (n = 2287) and in-depth participant interviews with patients and clinicians (ongoing). More women than men reported mental health misdiagnoses (41% vs 28%; p 0.001) and psychosomatic misdiagnoses (31% vs 16%; p 0.001). While more men than women reported being misdiagnosed with another physical disease (47% vs 46%), this difference was not statistically significant (p=.898). The modal diagnostic timeline since onset of disease symptoms in women was self-reported as between 1-2 years (16%), compared to less than three months for men (21%; p 0.001). Thematic analysis generated a central theme of mostly female participants feeling that their symptoms were dismissed or not taken seriously. Sub-themes further describe clinician dismissal with symptoms being attributed to: mental health, “all in your patients’ head,” menopause or other hormonal explanations: “Above all, being a 50 plus woman. Symptoms are often written off as “psychological”, “hormonal” or even “hysterical”!” (White, female, 60s, Sjogren’s, UK) Conclusion This study shows that female patients report feeling disproportionately misdiagnosed with mental health and psychosomatic explanations for their SARD symptoms compared to their male counterparts. While reasons for misdiagnoses are multifactorial, this study identifies ongoing discourses that position women as “hysterical hypochondriacs”, and highlights gaps in medical knowledge concerning the relationship between the female reproductive system and autoimmune diseases. This study is of key importance for addressing gender disparities in the diagnosis of autoimmune diseases. Disclosure S. Taylor: None. K. Naidu: None. M. Piper: None. S. Tayabali: None. A. Taiwo: None. R. Narendra Modi: None. O. Adegbulu: None. A. Kaul: None. W. Diment: None. M. Van Emmenis: None. R. Li: None. D. D’Cruz: Consultancies; GSK, Eli Lilly, Vifor and UCB. M. Sloan: Consultancies; OtoImmune. Grants/research support; The Lupus Trust, Lupus UK, and Vasculitis UK provided to Cambridge University.
Taylor et al. (Wed,) studied this question.