Sex and disease differences in patients’ diagnostic experiences in autoimmune diseases: an international cross-sectional study
This study surveyed 6,607 people with autoimmune diseases and found that women reported longer waits for diagnosis and higher rates of perceived psychiatric and psychosomatic misdiagnosis than men. The sex differences in survey responses are real, but the study cannot show whether they reflect clinician bias, differences in actual psychiatric comorbidity between men and women, or retrospective reinterpretation of clinical encounters. The most relevant confounders, measured in the study's data, were excluded from every statistical model.
What this paper claims
Women with autoimmune diseases face harder paths to diagnosis than men: longer waits, more clinic visits, and more frequent misattribution of their symptoms to psychiatric or psychosomatic causes. The paper presents these as findings about clinical care, recommending earlier consideration of autoimmune disease and examination of sex biases in medicine.
What evidence it offers
This is a cross-sectional online survey of 6,607 people with autoimmune diseases, recruited through patient charities, social media, and support groups. Participants answered questions about how long it took to get diagnosed, how many clinicians they saw, and whether they believed their autoimmune symptoms had been misdiagnosed as a mental health condition, as psychosomatic, or as another physical disease.
Every outcome is a patient's retrospective belief. No clinical records were checked. No clinician perspectives were collected. "Symptom onset" is whatever the patient remembers, for diseases whose early symptoms — fatigue, mood changes, joint pain — are gradual and hard to date. "Misdiagnosis" is what the patient believes happened, which may or may not match what the clinician intended.
The study collected data on psychiatric comorbidities — anxiety, depression, fibromyalgia — all more common in the female respondents, and all directly relevant to whether a psychiatric diagnosis was a misattribution or a correct diagnosis of a coexisting condition. None of these variables appears in any statistical model. The adjusted odds ratios cannot be interpreted as isolating a sex effect when the most obvious confounders sit unused in the data table.
What's good
The disease-group analysis is the strongest finding. Diseases with clearer biomarkers and visible manifestations (Type 1 diabetes, rheumatoid arthritis) show lower rates of reported psychiatric misdiagnosis, while diseases with vague or invisible symptoms (undifferentiated connective tissue disease, autoimmune encephalitis) show higher rates. This makes clinical sense and does not depend on resolving the perception-versus-reality question — it tells us something real about where diagnostic difficulty concentrates.
The limitations section is above average. It names the possibility that reported misdiagnoses may reflect reasonable differential diagnoses, diagnostic drift, or coexisting psychiatric conditions. It uses "perceived misdiagnoses" in places and calls the work "exploratory." The patient co-production process — including the decision to use "perceived" rather than asserting misdiagnosis as fact — is documented with specifics.
What's wrong with it
The study measured patient perceptions, did not validate them against clinical reality, and excluded from its statistical models the variables most likely to explain why men and women would report different experiences even without clinician bias. Comorbid anxiety, depression, and fibromyalgia — all more common in the female respondents, all recorded in the study data — were never included in any regression model.
This is not a minor analytical oversight. A woman who has both developing autoimmune disease and clinical anxiety may receive a correct anxiety diagnosis. After the autoimmune disease is identified, she may retrospectively classify the anxiety diagnosis as a psychiatric misdiagnosis of her autoimmune symptoms. The survey cannot distinguish this from a clinician who dismisses autoimmune symptoms as "just anxiety." The sex difference in reported misdiagnosis is consistent with clinician bias, but equally consistent with the sex difference in actual psychiatric comorbidity — and the study had the data to distinguish these and did not use it.
The abstract compounds the problem by dropping the "perceived" qualifier: it states that autoimmune disease had been "attributed to psychiatric and psychosomatic causes" at specific rates, describing clinician behavior rather than patient belief. A reader of the abstract comes away believing that clinicians misdiagnose women with psychiatric conditions at measurably higher rates. The evidence does not show this.
What would change our mind
- Confidence up: Reanalysis including anxiety, depression, and fibromyalgia as covariates. If the sex difference in reported misdiagnosis persists after adjusting for actual psychiatric comorbidity, the case for a genuine sex disparity in clinical behavior strengthens substantially.
- Confidence up: A study comparing patient-reported misdiagnosis to clinical records for the same individuals, testing how often perceived misdiagnosis corresponds to documented clinical attribution.
- Confidence up: Adjustment of the delay and visit-count comparisons for disease type. If the sex differences survive disease-mix adjustment, they become more informative.
- Confidence down: Evidence that survey dropout on the misdiagnosis questions differed by sex. If men were more likely to answer "unsure," the surviving male comparison group would be unrepresentative.
- Confidence down: A replication using a probability sample rather than a convenience sample recruited through patient advocacy channels, testing whether self-selection drives the rates.
Scoring Explanation
The study surveyed a large number of people and used reasonable methods for an online cross-sectional design. But two problems are fundamental.
First, no outcome is validated against any external source. "Misdiagnosis" is what the patient believes, captured by a single yes/no question. A clinician who mentioned stress as a contributing factor, a clinician who correctly diagnosed coexisting anxiety, and a clinician who dismissed autoimmune symptoms as psychiatric all produce the same "yes" answer. The study cannot distinguish among these clinically different situations.
Second, the adjusted models leave out the confounders most directly relevant to the central finding. Women in the sample reported anxiety at 24% versus 16% for men, and fibromyalgia at 14% versus 5%. A woman who has both developing autoimmune disease and genuine anxiety may receive a correct anxiety diagnosis that she later reinterprets as a misdiagnosis of her autoimmune symptoms. This would produce a sex difference in reported misdiagnosis driven entirely by differences in actual comorbidity, with no clinician bias required. The data to test this were collected. They were not used.
The headline comparisons on diagnostic delay and visit counts are never adjusted for disease type, despite large differences in disease distribution between the sexes. Forty-four percent of the sample dropped out before the misdiagnosis questions, and the paper does not report whether dropout rates differed by sex. The survey was distributed through patient charities and advocacy channels, with no way to calculate response rates or assess how much self-selection shaped the sample.
The statistical methods are well-chosen for the data — Bayesian ordinal regression for ordered categories, Firth penalized logistic regression for sparse cells. The Bayesian models use diffuse priors to let the data dominate. Odds ratios are reported with confidence intervals.
The failure is in model specification, not technique. The adjusted models control for disease group, age, continent, and household finances. They do not control for comorbid anxiety (8 percentage points higher in women), depression, or fibromyalgia (nearly three times more common in women). These are the variables most likely to explain why women would report more psychiatric misdiagnosis even without any difference in clinician behavior. The data were available. The analysis was not run.
The diagnostic delay and visit-count comparisons — two of the paper's five core claims — are presented without any adjustment for disease type. Women were concentrated in thyroid disease, lupus, and Sjögren's disease, all of which have vaguer biomarkers and characteristically longer diagnostic paths. Men were concentrated in rheumatoid arthritis and vasculitis, which tend to present more recognizably. The reported sex difference in delay could reflect differences in what diseases men and women have, not differences in how clinicians handle them.
The Cramér's V for the sex-delay association is 0.06 — very weak. In a sample of over 6,000, even trivial associations produce small p-values. The paper reports this statistic but frames the association as meaningful without addressing its small magnitude.
The paper measures what patients believe happened during their diagnostic journey. The abstract and interpretation present the findings as evidence about what clinicians did.
The abstract states that autoimmune disease had been "attributed to psychiatric and psychosomatic causes" at specific rates, without the qualifier "perceived." The interpretation recommends that clinicians "consider autoimmune disease at an early stage" and that "sex biases in medicine should be examined, challenged and mitigated." These recommendations follow only if the survey data reflect actual clinical misattribution rather than retrospective reinterpretation, correctly diagnosed comorbid conditions, or differential diagnoses that were reasonable given what was known at the point of care.
The paper acknowledges the perception-versus-reality issue in its limitations section, noting that "clinicians may have differing interpretations in some cases" and that "some reported misdiagnoses may reflect initial differential diagnoses." But these qualifications do not appear in the abstract. The adjustment for disease group shows that disease mix alone does not explain the sex difference — a legitimate finding. But the model excludes actual psychiatric comorbidity. The residual sex effect after adjusting for disease group, age, continent, and finances cannot be interpreted as evidence of bias when anxiety, depression, and fibromyalgia are omitted.
The paper moves from "women report more perceived misdiagnosis" to "women receive more misdiagnosis" without establishing that the second follows from the first.
Women in this sample had higher rates of anxiety, depression, and fibromyalgia. A clinician who diagnoses anxiety in a patient who has anxiety is not misdiagnosing, even if the patient later develops autoimmune disease and reinterprets the anxiety diagnosis as an error. This alternative explanation accounts for the observed sex difference without invoking clinician bias, and it was testable with the study's data. The test was not run.
The paper's argument that recall bias "is unlikely to differ systematically by sex" is stated without evidence. Women in the sample reported longer diagnostic journeys, meaning they recalled events over longer time windows with more clinical encounters. Women also had higher rates of anxiety, which is associated with more ruminative processing of negative healthcare experiences. The recall task itself differs between the groups even if neither group is fabricating memories.
The causal claim — that the disparity "may reflect both biological differences and systemic biases in healthcare" — is interpretive commentary presented as a finding. The study collected no data on clinician behavior, reasoning, or disease severity at presentation. It cannot distinguish clinician bias from differences in disease presentation, health-seeking behavior, comorbidity, or recall.
The study has a registered protocol, disclosed funding and conflicts, obtained ethics approval, and includes a substantive limitations section. It reports a null finding (no sex difference in physical-disease misdiagnosis) alongside the positive findings.
No data, survey instrument, or analysis code is shared. No sample size justification was performed for the primary analysis. The 44% attrition on the misdiagnosis outcome is reported only as a total, without sex-specific breakdown. The paper collected comorbidity data that bear directly on the central finding, reported them in the descriptive table, and excluded them from every model without explanation.
The paper's descriptive findings stand on its survey data and do not depend on citations. The interpretive framework — that the sex difference reflects systemic bias — draws on a narrow set of sources, six from the lead author's research program. These self-citations are relevant, but no independent replication of the interpretive claims is cited.
The argument about "historical biases in medicine" cites studies documenting contemporary sex differences in diagnosis, then attributes these to historical bias without evidence for that causal link. A citation for medical-record errors (Weiner 2020) is used to argue for the validity of patient recall — a stretch, since errors in clinical notes do not establish that patient retrospective accounts are more accurate. Literature on sex differences in health-seeking behavior and on the clinical validity of functional somatic diagnoses — both directly relevant — is absent.
The study was funded by five UK patient charities, recruited through those charities' networks, and reached conclusions consistent with their advocacy position: that patients, especially women, face dismissive care. This is not the same pressure as pharmaceutical industry funding, but it is a directional interest that aligned with every analytical choice in the paper.
The decision not to adjust for psychiatric comorbidities is the most concrete concern. Including anxiety, depression, and fibromyalgia in the models could have attenuated or eliminated the sex difference, producing a result less useful to the funding charities. The data existed. The paper adjusts for disease group, age, continent, and finances — variables that do not threaten the core finding — but not for the variables that most directly could.
Key Claims
Women with autoimmune diseases are more likely to have their symptoms wrongly attributed to mental health or psychosomatic conditions
Women in the survey reported this experience more often than men (43% vs. 33% for psychiatric, 34% vs. 22% for psychosomatic), and the difference was clear in the data. But no clinical records were checked, and women in the sample also had much higher rates of actual anxiety (24% vs. 16%) and fibromyalgia (14% vs. 5%) — conditions whose correct diagnosis could later be reinterpreted as misdiagnosis once the autoimmune disease was identified. These comorbidities were measured in the study but never included in any statistical model.
Women with autoimmune diseases wait longer for diagnosis and see more doctors before getting one
Women reported longer times to diagnosis (60% waited over a year, versus 50% of men) and more pre-diagnosis visits (26% saw eleven or more clinicians, versus 18% of men). The differences were consistent across multiple measures, though the overall strength of the association was very weak, and the comparison was never adjusted for the fact that men and women in the sample had different autoimmune diseases with inherently different diagnostic timelines.
The sex gap in reported misdiagnosis is not explained by which autoimmune disease people have, their age, where they live, or their income
After adjusting for all of those factors, women still had roughly 1.5 times the odds of reporting psychiatric misdiagnosis and 1.7 times the odds of reporting psychosomatic misdiagnosis. But these models left out the most relevant confounders — comorbid anxiety and fibromyalgia, both far more common in the female respondents — so the residual sex effect could reflect unmeasured differences in actual psychiatric comorbidity rather than a difference in how clinicians treat men and women.
References (35)
- Meinecke, Kreis, Olson (2024). Impact of time to diagnosis in patients with primary Sjogren's syndrome: a cross-sectional study. Clin Exp Rheumatol
- Oglesby, Korves, Laliberte (2014). Impact of early versus late systemic lupus erythematosus diagnosis on clinical and economic outcomes. Appl Health Econ Health Policy
- Sloan, Bosley, Gordon (2025). 'I still can't forget those words': mixed methods study of the persisting impact on patients reporting psychosomatic and psychiatric misdiagnoses. Rheumatology
- Lehmann, Pohontsch, Zimmermann (2022). Estimated frequency of somatic symptom disorder in general practice: cross-sectional survey with general practitioners. BMC Psychiatry
- Caspi, Houts, Moffitt (2024). A nationwide analysis of 350 million patient encounters reveals a high volume of mental-health conditions in primary care. Nat Ment Health
- Finkelstein, Diamond, Carson (2025). Incidence and prevalence of functional neurological disorder: a systematic review. J Neurol Neurosurg Psychiatry
- Ngo, Steyn, McCombe (2014). Gender differences in autoimmune disease. Front Neuroendocrinol
- Hu, Chen, Shen (2022). Global prevalence and epidemiological trends of Hashimoto's thyroiditis in adults: a systematic review and meta-analysis. Front Public Health
- Varas-Martin, Ros-Gonzalez, Sierra-Mencia (2025). Sex differences in patients' referral to a headache unit. Front Neurol
- Cader, Banerjee, Gulati (2022). Sex differences in acute coronary syndromes: a global perspective. J Cardiovasc Dev Dis
- Lyratzopoulos, Abel, McPhail (2013). Gender inequalities in the promptness of diagnosis of bladder and renal cancer after symptomatic presentation: evidence from secondary analysis of an English primary care audit survey. BMJ Open
- Tarannum, Widdifield, Wu (2023). Understanding sex-related differences in healthcare utilisation among patients with inflammatory arthritis: a population-based study. Ann Rheum Dis
- Kentrou, Livingston, Grove (2024). Perceived misdiagnosis of psychiatric conditions in autistic adults. eClinicalMedicine
- Clareus, Renstrom (2019). Physicians' gender bias in the diagnostic assessment of medically unexplained symptoms and its effect on patient-physician relations. Scand J Psychol
- Harrilal-Maharaj (2025). Gender bias and diagnostic delays in young women: a narrative review. Cureus
- Bandinelli, Martinelli-Consumi, Manetti (2024). Sex bias in diagnostic delay: are axial spondyloarthritis and ankylosing Spondylitis still phantom diseases in women? A systematic review and meta-analysis. J Pers Med
- Sloan, Wincup, Harwood (2023). Prevalence and identification of neuropsychiatric symptoms in systemic autoimmune rheumatic diseases: an international mixed methods study. Rheumatology
- Bürkner, Vuorre (2019). Ordinal regression models in psychology: a tutorial. Adv Methods Pract Psychol Sci
- Wijnands, Zhu, Kingwell (2019). Five years before multiple sclerosis onset: phenotyping the prodrome. Mult Scler
- Sloan, Bourgeois, Leschziner (2024). Neuropsychiatric prodromes and symptom timings in relation to disease onset and/or flares in SLE: results from the mixed methods international INSPIRE study. eClinicalMedicine
- Piper, Tunks, Humfrey (2025). 'My world has shrunk': a mixed-methods exploration of the impact of systemic autoimmune rheumatic diseases on patients' lives. Rheumatol Int
- June, Aggarwal (2014). The use and abuse of diagnostic/classification criteria. Best Pract Res Clin Rheumatol
- Murimi-Worstell, Lin, Nab (2020). Association between organ damage and mortality in systemic lupus erythematosus: a systematic review and meta-analysis. BMJ Open
- Samulowitz, Gremyr, Eriksson (2018). 'Brave Men' and 'Emotional Women': a theory-guided literature review on gender bias in health care and gendered norms towards patients with chronic pain. Pain Res Manag
- Chang, Johnson (2025). Confronting the systematic invisibility of women's health. Lancet Obstetr Gynaecol Womens Health
- Arnegard, Whitten, Hunter (2020). Sex as a biological variable: a 5-Year progress report and call to action. J Womens Health (Larchmt)
- Uddin, Liang, Guo (2026). Gender-based data bias and model fairness evaluation in benchmarked open-access disease prediction datasets. Comput Biol Med
- Mahr, Hebich, Weinberger (2025). Toward demographic robustness in digital patient twins: addressing the gender data gap. Digit Health
- Motta, Di Simone, Selmi (2025). The impact of menopause on autoimmune and rheumatic diseases. Clin Rev Allergy Immunol
- Simard, Chaichian, Rizk (2022). Are we missing lupus in males? Evidence of cognitive bias from a randomized experiment in the United States. Am J Epidemiol
- Sloan, Naughton, Harwood (2020). Is it me? The impact of patient-physician interactions on lupus patients' psychological well-being, cognition and health-care-seeking behaviour. Rheumatol Adv Pract
- Sloan, Andreoli, Zandi (2023). Attribution of neuropsychiatric symptoms and prioritisation of evidence in the diagnosis of neuropsychiatric lupus: mixed methods analysis of patient and clinician perspectives from the international INSPIRE study. Rheumatology
- Harwood, Wincup, D'Cruz (2025). Diagnostic overshadowing in systemic lupus erythematosus (SLE): a qualitative study. Lupus
- Weiner, Wang, Kelly (2020). How accurate is the medical record? A comparison of the physician's note with a concealed audio recording in unannounced standardized patient encounters. J Am Med Inform Assoc
- Wise (2025). Jess's rule: GPs urged to use 'three strikes and rethink' approach to prevent patient deaths. BMJ